Suggs Family

2010-09-21T10:36:00.001-05:00

Yesterday Miles had a psychological evaluation at Texas Children's. It went well although it was a bit draining for everyone. They had three main recommendations.

1. Have a neuropsychological evaluation - Neuropsychological evaluation (NPE) is a testing method through which a neuropsychologist can acquire data about a subject’s cognitive, motor, behavioral, language, and executive functioning. In the hands of a trained neuropsychologist, these data can provide information leading to the diagnosis of a cognitive deficit or to the confirmation of a diagnosis, as well as to the localization of organic abnormalities in the central nervous system (CNS); the data can also guide effective treatment methods for the rehabilitation of impaired patients. NPE can include testing of intelligence, attention, memory, and personality, as well as of problem solving, language, perceptual, motor, academic, and learning abilities. Apparently this will be very involved and extensive...which is good.

2. Have a NEW OT evaluation at TCH. The evaluator yesterday said they would do what they could to push it through to get it sooner than later. You can see a big difference between Miles' work at school and the work from the other kindergarteners who are a year younger. He can write his name every time but sometimes it’s backwards (Aunt Chris says this isn't abnormal) and most of the time really tough to decipher the letters. That is the only thing he can write consistently but if we help move his hand he can write most anything else.

3. They would like Miles to go to a clinic at TCH for children with chronic illnesses that have issues with anxiety. He gets anxious about many things and has a tough time with change. They said that since he was in the NICU at TCH he has a good chance of getting in to this clinic unless they aren’t currently accepting new patients.

I am hoping that I will hear from them soon about getting all of this scheduled. In the meantime I am trying my best to help him do well at school. I have been telling him to ‘think green!’ and the other day he wore green silly bands to help remind him to be green and he DID get a green WITH a smiley face! He was so proud! We know he can do it but it takes constant reminding and focus from everyone. My memory is for s most of the time so this has been tough for me too! His teacher has been great and very encouraging to Miles as well! She has quickly fallen in love with him but most people do :)

Riley had a similar eval at the recommendation of his teacher last year – she thought he may have ADD or something. He was getting distracted easily and sometimes not finishing his tests/assignments. Heard back from that eval yesterday - the dr says – he is a normal/typical 8yr old kiddo – doing great! No follow up recommendations needed :) So far this year he is doing great in school so we aren’t concerned right now.

Thank you all so much for your prayers and msgs :)

Go Texans!

Pulmonary Update

2010-01-15T14:09:00.002-06:00

We saw Dr. Moore on Tuesday and liked him very much. He was great with Miles! We found out this week that another good friend of ours sees him too!

He says Miles has asthma for sure and switched up his meds a bit. Changed us from pulmicort nebs to a Flovent puffer and also gave us some oral steroids to keep on hand in case he needs them. He also gave us an "asthma care plan" which is like a step by step of what to do if he starts to have trouble which is pretty cool. All stuff ya already know but good to have on hand for the babysitter and stuff.

The check up schedule is as follows...Feb 5 - Cardiology (getting nervous!!)...Feb 8th - Renal...Feb 18th - Neurology...and finally Feb 24th - We follow up with pulmonology.

Cardiology is the only one I am getting nervous about. The most likely senario is that Miles will need a stent in his conduit - which just means a heart cath. It would be his 3rd if that is what he needs. I only say this because that is what the pc said last year when we saw him. He is doing SO well, if he needs any other intervention I would be very surprised. And he could need nothing at all which would totally rock! Because his pulse ox is still lower than they expect with his repaired heart I suspect that he still has some shunting from his now-closed fenestration.

He has shown quite a bit of curiousity lately about his heart and what surgeries and such he will need down the road. He asks the best questions and sometimes they are difficult to answer, for example, mommy how will the doctors open my chest to get to my heart? My response - they will use doctor tools. He seemed to be okay with that. I don't think I need to use terms like surgical saw and heart lung bypass machine just yet. His Dad and I are always honest with him but try very hard to explain things on his level and for the most part I think we do okay.

Please keep those fingers crossed that all of our February check ups are full of good reports!!!!

2010-01-09T10:19:00.000-06:00

Things have been good for the most part, which has been nice. I hope everyone had a good holiday season!

January and February are full of check-ups for Miles. Next week we see pulmonology for the first time. Miles was in the hospital in November and diagnosed with asthma. The pediatrician says they may want to do a lung function study. His asthma is strange in that he doesn't wheeze or have an 'asthma attack' - he coughs. Dry, unproductive coughs - and he can't stop - has a hard time talking, eating, taking meds but never really appears to be in distress besides the constant coughing until the 'attack' passes (with lots of help from xopenex and pulmicort). He was admitted another time in November for a seizure but has been doing amazingly well since.
His pulse ox has been lower than usual too but that could be the asthma. He sees cardiology in early February, then neurology and then renal. He has been off of the BP meds for a while now and has done really well.

He has had lots of questions lately about when he will have surgery next and what kinds of things the doctors will do to his heart, how they will get to his heart, stuff like that. Those are trying to answer without scaring him. I tell him we don't need to worry about when he will have surgery again - we trust our doctors and let them worry about that for us. When it is time they will tell us :) Last word from the doc was that a stent will be done before the next open heart anyway - which should add a few years to the conduit so I feel pretty safe that the conduit replacement is still a good way off.

Thanks for checking on my little man! :)

Been a while...

2009-11-11T20:30:00.004-06:00

Let's see...

Cardio...Miles is doing well cardiac wise. His next check up is in February. He gets tired alot but I am not sure if that is behavioral or heart stuff. His fingertips are red all the time but who knows...that could be marker!

Neuro...He has not had a seizure since June which rocks! We missed our appt with neuro this last time and weren't able to reschedule til the spring. We are holding steady with 10mls BID which seems to work very well for him. One thing he does do is fake staring off which bugs the heck out of me!

eye stuff...It still does it but I don't notice it as much. The eye doc says it IS 4th cranial nerve palsy eventhough it does not show on the MRI. We just watch it and make sure that his head tilt doesn't get worse and follow up with the doc.

Renal...We are officially OFF of the BP meds!!! His BP was holding pretty steady on the meds so we did a trial off of them and we have not gone back on them. I have spot checked his BP from time to time and it has been a little crazy so we are keeping an eye on it, taking it once a day. The doc was a little concerned with the 112/95 but mostly we get 116/66 or somewhere around there.

We are all swine flu and reg flu vaccinated and staying healthy - mostly thanks to his breathing treatments and inhaler. As long as we stay on a rigid schedule he does very well!

Riley is doing great in 2nd grade! He got all A's and is playing the recorder. His birthday is next week on the 20th...I can't believe he will be 8yrs old! wow!

My dad's birthday is this saturday...our first one without him. I miss him so much!

I think we are all ok on all other fronts except Miles' behavior! Geez he has been a handful! We are working on that though.

still no answers...

2009-07-10T22:32:00.000-05:00

So the pediatrician today says she doesn't think it is neuro or cardiac but possibly renal...hypertension or hypotension. I will call renal next week and talk to Beth (the renal nurse), she is great and I will get Dr. Feig to look over the tests and maybe call the ped to get her take on it. We did some blood pressure stuff today - one laying, one standing and one sitting. laying was about 103/62 ish hr was 108...standing was about 106/65 ish hr was 103...sitting was 92/29 with a hr of 39. She came back and got his hr again and she got 89 sitting. hmmm...redid the bp and got 96/59 or something like that. bettter but still very different...

today he did well. He finished the holter and that will get turned in tomorrow. I am so tired! I am off to dream land...

love and hugs to all!!!

No Answers so far...

2009-07-10T07:41:00.002-05:00

Miles was released from the hospital yesterday with no answers. The summer camp/daycare he attends called and said that he was very flushed, glassy eyed, unsteady on his feet and slurring his words. Their dad and I rushed up there to get him/make sure he was okay. The teacher then told me that while we were on our way up there he said that his heart hurt and he needed someone to listen to it. He looked okay to me when I got there - quiet, calm, reading a book and singing sweetly - he was also not sweaty. We called the pediatrician who said to bring him to the hospital to check him out. Her concern was some sort of ingestion of something OR a partial seizure.

I love it when the doc calls ahead cause we got right into a room - not wait in the lobby. :) We figured they would listen to him, check his electrolytes, maybe check trileptal levels and send us home. They admitted him. Cardiology consulted and said they didn't think it was cardiac - we did an EKG just to be sure. The ER docs theory was Ischemia of the brain - not enough overall oxygen to the brain which caused it to seizure up a bit causing stroke like symptoms. Like a stroke without the blood clot. Neurology admitted him and wanted to see him in the morning. He had an uneventful night, they monitored his pulse ox which stayed steady at 95% or so.

Neurology said it did not sound like a seizure - the theory from him was a combination of things. He said if he has low cardiac out-put already (which I don't think he has) he may not profuse his body as well as others. Couple that with slight possible dehydration and you get strange neuro symptoms. (if he didn't profuse well - would his pulse ox stay that high?) We checked his electrolytes and they were normal - theory out the window. Neuro says it is cardiac.

Cardiology comes and looks at him and says he looks great (which he did). They put a holter on him and sent him home. We will follow up in clinic for an echo. We didn't do the echo while we were there because Miles was sick of being in the hospital and was not listening to anyone - at all. An echo would have been torturous!

So...sent home with no answers. One time yesterday while we were there Miles said his heart hurt again. I hope the holter will show something or that we can figure this out another way.

We got some pictures taken...they are great!!!! Enjoy...

2009-05-12T14:43:00.009-05:00

Two posts in one...

2009-05-04T15:57:00.001-05:00

HAPPY BIRTHDAY MILES!!!!!

Today is Miles' 5th birthday!!!! I can't believe he is so big! He had a great birthday party over the weekend at Chuck E Cheese and loved playing with all of his new toys/games.
The last 5 yrs have gone by so quickly and so slowly at the same time. When I think of all he has done in his 5 yrs versus what I have done in my 33 yrs it is astounding. I am so proud of him for so many reasons.

He has his 5yr check up tomorrow and will need to follow up with his neuro from the seizure (if he will return our calls...grrrr!). He has been quite tired all the time since the seizure last week. No obvious reason for being so tired and doesn't seem to be sick at all unless it is coming on very slowly. He just doesn't have the stamina he did just a week ago.

Today we will celebrate again but I am not sure what we will do yet. Thank you all for being on this journey with us and praying for my amazing 5 yr old maniac :)

April 30th

I was going to post about how we got the results of Miles' trileptal levels and they are great - 23! We want it between 15 and 35 so this is perfect! But then the little stinker had a seizure last night. This time he had a petit mal seizure instead of a grand mal. It lasted about 15 minutes - which is amazing for him! Sean called me when I was at work at the bar and I rushed over to his place. The EMTs were there and the seizure had just stopped. We decided to go ahead and take him in to the ER because he has never done that before - just stopped after 15 minutes. He usually seizes much longer (like 2hrs) and we didn't know if he was going to start again or what. Texas Children's had the 1st death from swine flu yesterday (an 18 month old I believe - so sad!) so they were backed up for 4hrs. The ambulance was redirected to Memorial Hermann Children's. It was a nice hospital and everyone was very nice. However...there is so much to be said about continuity of care. Miles having never been there before with all of his issues was not a good idea. They were great, don't get me wrong, but none of his doctors are there. They couldn't get a hold of his neuro, ped, the neuro's NP...nothing. They took a chest x-ray but I am still not sure why, monitored him for a bit and sent us home. Fast ER trip overall. He follows up today with his pediatricians office - at the same time that I have a root canal so I won't be at the appointment.

Overall, despite the seizure yesterday, Miles is doing FANTASTIC! He has been healthy, not needed any breathing treatments, been doing well at school (although he did hit another little boy yesterday)...just doing great! Riley has been doing very well too! Two weeks in a row of behaving well in class (he is super silly and it gets him in trouble sometimes). Also, scored amazingly well on the Stanford again this year.

2009-03-20T16:01:00.003-05:00

Miles had an appointment with his neurologist Dr. Fernandez yesterday. His trileptal levels are low again. In January when he had the seizure they were at 5.5 and in February when we followed up they were 3.4 (or 4.3, I can't remember). He is supposed to maintain a steady level between 15 and 35. Dr. Fernandez said that he processes the trileptal through his liver too quickly. He wants to raise the dose again (AGAIN!). So he upped it to 10mls BID - which is 1200mg/day! (Aunt Christy, don't you take 1500mg/day at 32yrs old?) He said there won't be anything to worry about with that quantity of meds in his system (really?) except him being tired. Miles has never really gotten sleepy when he has had his trileptal - well the very first day he took it he got sleepy - in Oct 2007 - and we have raised the dose 10 times since then. With this low level of meds in his system he could really have a seizure at any time. He said it takes 10 days to really get in the system and get a good level. We will check it in 2 weeks and see where we are. I put a call in to the pediatrician to get her take on this. Do we just continue to raise his dose or should we find something else that works for him? The normal dose of trileptal is 25mg/kg and now Miles is at 70.5mg/kg! Almost 3 times the normal dose. CRAZY!

After the appointment we did the labs from Dr. Feig - the renal specialist - he checks a complete metabolic panel every time we go. We saw him earlier this month and couldn't get any blood on the first try. Let me tell you - Alma cream is the bomb! This was the first time we used it and it was great! There were still lots of tears but mostly because of fear of past experience but he did great and they got him on the first stick! Oh yeah, Renal went well. His BP looks great but because of his severe regurgitation we will keep his meds as is because coming off the meds could speed up the timeline to the next surgery and we don't want that.

Went to see Dr. Lai the opthamologist. Still no clue what is going on with his eye. Not nerve palsy, not a tumor, not muscular and does NOT think it is myasthenia gravis :) That is great! What the heck is it? check out the pic. Overall it doesn't seem to bother him except the slight head tilt.

I think that is it...oh, since the undecended testicle surgery in January Miles has grown 2cm! and gained 2kgs!!!!!! very cool!

love to all!

Update

2009-03-05T07:15:00.003-06:00

Sorry I am SO slow at updating the blog! The MRI showed little change from his last MRI which means no brain tumor! (yeah!!!!) He does have hippocampus sclerosis but so do 65% of epilepsy patients, some damage to the nerves in his white matter, inflamation in his paranasal sinus and mastoids and NO 4th cranial nerve palsy.

We saw Cardiology in February - everything looks great! A little more narrowing to his conduit and valve and the valve no longer works but he is tolerating all of that very well and won't need surgery this year! We will see Dr. Justino again next year :)

We followed up with the eye doctor to get his take on the MRI. With no nerve palsy - what the heck is causing his eyes to do that thing? Well, Dr. Lai didn't have any answers for us except that he thinks Myasthenia Gravis is a long shot (thank God!) becasue the symptoms are severe from what he says. He has been the first to say that but he said that Miles' respiratory system would tire out during the night and he would wake up gasping for breath and that he would have extreme fatigue, and his eyes would droop. We don't have any of that so I feel a little better about the possibility of MG. The neurologist is next on the 19th - he was the one that said MG in the first place so lets see where he is on it. Miles had his thymus gland removed during his open heart surgery - which is one of the treatments of MG. I asked that if he has already had it removed could it be possible that he is already being 'treated' for it and that is why we don't have severe symptoms? (Sounded logical to me) He looked at me like I was speaking in another language so maybe I didn't come across. I will ask the neuro the same thing. Anyway, concensus from the eye doc is that we don't know why his eye does this. It isn't muscular, it isn't nerve palsy, it isn't a tumor, he doesn't think it is MG. His head tilt is only about 5 degrees so far and he doesn't complain of seeing double very often. So we live with it for now I guess. We go back in 6 months and if it worsens to the point that his head tilt is about 10 degrees then we can do surgery. My question there is - surgery on WHAT? His eye I know but if it isn't muscular would that do any good to cut and reattach the muscle? (no!) Who knows...I sure don't.

Riley is doing great! Just finishing up his TAKS testing this week (for those of you from KY - that is like the KEST testing we used to do...a baloo is a bear, wuzzle means to mix, a yonker is a young man - you know you remember that!) He is so smart, and so fun and silly (sometimes too silly!) and he and Miles love each other a ton! He is the best big brother and has gone through so much with Miles - often times not getting the attention he deserves. God picks very special children to be the siblings of chronically ill children! He has such a loving heart - we are very blessed!

I will try not to say away for too long...

We were due...

2009-01-20T08:00:00.003-06:00

It has been 5 months since his last but, Miles had a seizure on Sunday and was admitted to TCH for observation. Thankfully he only had Valium this time! He was crazy and belligerent when he woke up initially but went back to sleep for a LONG time. When he woke up again he was such a doll! He was so sweet to everyone and smiled a huge grin when anyone came in the room! He also opened his mouth right up when the doc asked to see his badly bitten tongue (from the seizure) - this tells me he was still drunk! He doesn't open his mouth for the docs normally - not at all!

We were released yesterday around 2:45 or so...well we were released a teeny bit earlier than that but we were in the middle of eating lunch...then we ALL fell asleep! Anyway, this seizure lasted only about 45 minutes with only about half of that with solid convulsions. He starts with this gaze and is still responsive - even while going in and out of convulsing he is responsive to a point. It always scares the crap out of me cause you think he might be completely aware of what is going on and that always makes me incredibly sad. His dad said that the EMTs this time were great which is awesome!

Next week - the 27th - is the MRI...send good thoughts for good results! I am not sure what good results would be yet...MG is progressive...brain tumors suck...Maybe good results would be that everything is clear and the eye stuff is completely unexplainable and won't ever be a problem for him...oh, and one day just clear right up, never to be seen again...is that possible? I hope so!

Myasthenia Gravis or Brain Tumor??

2009-01-09T08:41:00.000-06:00

Miles had surgery on the 6th for his undecended testicle. It went really well! We did get the anesthesiologist we requested so that was great - it makes a huge difference for Miles when he is familiar with the doctors, at least it seems that way. He and Dr. Campos went skipping down the hallway to surgery together (not kidding, like really skipping - it was so cool!).

Next on the horizon for my little man is to get this MRI done! We are #1 on the cancelation list which is good. Now I just have to keep him healthy enough to have it done! Lots of breathing treatments should help with that.

I talked to his pediatrician about the eye stuff and this is what was said...Myasthenia Gravis is a possibility. This is an autoimmune disease that attacks the voluntary muscles. It causes extreme fatigue but gets better with rest. It can be debilitating for some but most people live a pretty normal life :) The treatments for it include an immunosuppressant, IVIG (I think that is right) or possibly removing the Thymus Gland. There are others that I can't think of right now. This disease can be exclusively ocular - which might be the case with Miles. We have to test him for it...however...it is apparently extremely rare for children his age to have this disease and we aren't entirely sure which tests can be performed on him just yet. The doc is getting with the rheumatologist to discuss Miles and will get back to me soon. The MRI is to rule out a brain tumor. Frankly, I don't like either of the options and I am praying that it is just a crazy fluke and he just has a funky eye :)

Holy Crap is it December Already!

2008-12-04T12:06:00.002-06:00

So things have been hoppin' around our house for quite a while. Miles is fine, Riley is fine. I am good and Sean is good. Just "stuff" ya know?

Miles has had kidney stones, now has a hernia and was diagnosed with 4th cranial nerve palsy over the last several weeks. We go tomorrow to meet with the surgeon to see about the hernia. We are talking to neurology in reference to the palsy - they think it is caused by his epilepsy. We (the pediatrician and us) feel that it may be time for a new MRI because the 'eye thing' started out of the blue - well not completely out of the blue. His eye has been turning too far in since his first seizure when we were in KY last Christmas. Now it is just doing it alot - almost all the time and getting stuck from time to time. Also - with no seizure activity since August we think there might be something else going on. (crap! I don't want something else!)

Overall - he is doing so well! (ya know minus the above) He is kickin' butt in pre-k! (I guess that isn't too hard when he is the only kid in the class that doesn't have developmental delays) He is growing...well I think so...his 2T pants are FINALLY too short (he will be 5 in May).

It turns out that I was diagnosed with the same blood disorder as Riley. (von Willebrand disease) I think back over my playing softball and cheerleading and whatever else I wanted to do and I SOOOO think he can play sports! I told him that if he wanted to sign up for Karate that he could. He said, Mommy the doctor said that I can't so I don't want to. He is such a rule follower :) love him!

My Dad is home from the hospital and cancer free! Thanks for all the prayers and good vibes!

Hopefully it won't be too long before I update again. BUT not having much medical stuff to update isn't really a bad thing - especially this year!

sorry it has been so long...

2008-10-20T21:34:00.002-05:00

So lets see...the liver panel was normal, no cause for alarm. We went to see neuro at TCH and they said that he is indeed allergic to the diastat and the ativan and to NOT give it to him. We are to call 911 when he has a seizure and refuse ativan when the EMTs show up, refuse it again at the ER and demand fosfenytoin right away. He raised his trileptal once again - he is now up to 960mg/day! wow! however! Since he has started to take the higher dose he has done sooo well! He has started in public pre-k, which is neat. He is pretty darn smart so the public preschool for children with disabilities was a little scary for me - I was concerned about putting him with kids below his intellectual level. However, this is an inclusion program so he spends a good part of his day with the kindergarten class and with the regular pre-k class which is great!

My dad had his surgery for the cancer. I could write all night on how things went but the short version is this:
The cancer was too close to his broncial tubes so they took all of his right lung. The left lung has emphysema and COPD, he got pnuemonia too. His lung collapsed, he had to be put on the vent. He had multiorgan disfunction and sepsis. The nurses were preparing us to have to pull the plug - they just didn't think he would be able to come off the vent with just the one very sick lung. He had to get a trach after he failed the attempt to come off the vent (his bpm went up to 59!). After the trach surgery he coded and had to be given CPR. They have slowly woken him up (after 3 weeks of being out!) and he is now in Kindred hospital (inside Jewish Hospital in Louisville) sitting up and using a speaking valve to talk - after coding just a little shy of 2 wks ago! he will be in the hospital for a while still doing rehab - physical and pulmonary. I was there for 3 weeks and it was stressful to say the least - however, I really did enjoy the time I spent with my family. My sisters are the best! My mom has really been holding up great! 39 yrs of marriage and to come that close to loosing him, wow!

I miss Kentucky! I miss my home!

Riley is doing really well in first grade - has lost two teeth and is getting taller. He is pretty stinkin' smart and does really well in school. He read a 15 chapter book the other day (in one day), blows me away!

Thanks for all the prayers!

recap of this week...

2008-08-21T21:42:00.000-05:00

So lets see...My Dad was diagnosed with lung cancer on Monday. This is the second time he has had lung cancer and it is in the same lung as before. Fourth time to have cancer all together (skin, lung, bladder and lung again). They took out part of his lung last time so this time they are going to take out just a wedge of it. He had a stress test today and did well. Next is a scan of his brain. I talked to him today and he sounded good. I feel bad being this far away...

I don't think I have written about it yet but my oldest son was diagnosed with a blood disorder, von willebrand disease. Today we spent from 8am to 4:30pm at the cancer/hematology center at Texas Children's Hospital so that he could do the DDAVP challenge. This is a medication and today was to see if it works for him. He got his first ever IV. They took his blood, gave him the meds and then took his blood again 1, 3 and 5 hours after the meds were administered. We weren't just at the cancer center but in the infusion area. There were lots of different kinds of kids there. Some for chemo, some for sickle cell stuff (blood transfusions) and some for other stuff. The kids all seemed okay. There were lots of games, movies, crafts and even a dance group came for entertainment. The parents (myself included I am sure) all looked so tired and worn out. You could see sadness in their eyes. Alot of the parents were either just sitting staring off into space or like myself reading and dozing off from time to time. Riley's blood disorder is not severe and I probably have it as well as it is genetic. I know my kids have their health issues...both of them now...but I am grateful today. Grateful that things are the way they are and are not worse, ya know? It has been stressful lately with the heart cath and then the seizure 2 wks later, the VWD diagnosis for Riley and now with my dad having cancer again...and yes, stressful is an understatement...but I am grateful for what I do have.

Another piece today that has kept things in perspective...please pray for the Dereksen family...Tommy lost his fight with CHD last night (and boy did he fight!). He was such an amazing boy and he will be missed.

Today was better!

2008-08-13T20:49:00.000-05:00

We went to the pediatrician today. His trileptal levels were at 9. They were at 3 for his last seizure in May and after they increased his meds his levels were at 16.9. So then I am led to ask - is this a metabolic issue? Seems like he metabolizes the trileptal okay for a little while then too quickly? And doesn't metabolize the ativan at all. His liver is enlarged a bit which is concerning. We are going to do a liver panel, CBC and trileptal level in a few weeks. She said she will check the liver panel that the TCH ER did. We talked about the neuro consult that came to the ER and sent us home - neither one of us are fans of hers. She said that if they had called her (which they should have, she was on call all weekend) she would have surely not let them send us home. She is going to talk to our neuro and see if there are other options besides the diastat or ativan in an emergency.

The EMTs said that the max they can give an adult of the diastat is 10mg - 5mg each dose. Miles' one dose is 7.5mg and we were told that if that doesn't work in 3 minutes then to dose him again - that is 15mg! She agrees with me that he is possibly allergic to it - he had a rash all over his face in seconds and then his breathing became labored and sounded like he was snoring/gurgleing. His bpm went WAY down.

Oh and get this - when we got to the ER yesterday his bp was 169/96 - not kidding! His blood sugar was 111 - is that okay? I know seizing can raise your blood sugar and cause you to spill keytones over into your urine so that number may be only because of the seizure.

We do have an appointment with the TCH Neurology only because of continuity of care...I don't know if I should stay with Memorial Hermann or go to TCH for this...

2008-08-12T11:21:00.001-05:00

I have no idea where the TCH ER put my child! He has not been himself - not even close! He won't pee, eat or drink. He has been inconsolable all day, screaming, talking in a very high pitched voice all day long, unsteady on his feet, drunk, babbling, talking about things that don't make sense or aren't possible. Right now he is taking off his clothes and turning over the footstool saying he doesn't want the top on it. He says he is thirsty but wont drink...I am going back to the ER to find my boy! (that was last night...)

So...we came in and he put on a real show for the docs! We were admitted for observation. He did pee at the ER which was good but he hasn't gone since. Their concerns were that his kidney's were not working because even though he hadn't gone potty, his bladder was not full, they are questioning whether or not he can metabolize ativan (supposed to be a pretty short lived med) and they looked at possible continuing seizure activity. He hasn't even really begun his normal postictal behavior. I did get him to eat a bit just a few minutes ago. This morning he poured his syrup for his breakfast all over his tray, put his french toast into his cereal, poured his water all over his tray and put his butter in the syrup container...but ate nothing. It has been pretty clear that there is something wrong with the boy. Hopefully we can get sprung today.

AND - some terrible person broke into my car and stole the DVD player. (pardon my language) grrr! AND then I still had to pay for parking!

...vacation all I ever wanted, vacation have to get away...

yet another seizure...

2008-08-11T10:30:00.000-05:00

Just got back from the hospital with Miles. He had a seizure last night and that bought us another ambulance trip. Gave him the diastat and that didn't work so we called 911. He had 2 doses of ativan and one of cerebrex (phenobarbital) before it stopped. They were going to admit him but he woke up so they sent us home. I have not slept and am exhausted! He is a funny drunk! He keeps saying - I love you guys! He is slurring his words and he keeps saying he wants to do the weirdest stuff. Off to sleep for me...

the allergic reaction...

2008-07-25T18:20:00.001-05:00

Miles' cath

This is a little video I took of Miles when he was having his allergic reaction. It came in handy when the docs came by after he started to get back to normal. He was SO asleep here! Like a rag doll!

The video didn't work so here is a link to all the pics i took while we were in the hospital, the video is in there.

home!

2008-07-25T17:43:00.001-05:00

Sorry it took so long to update...We are home! Miles was released at about 3pm. The echo today showed some residual leakage from right to left so he is re-oxygenating some blood - which doesn't explain the pulse ox being low. His pulse ox leveled out at 94% and since we got the echo today we don't have to go back to the cardiologist for 6 months! cool! If we weren't going to be able to have the echo we would have had to go back in a month. I think the lower pulse ox is from the little collapse of his lung which will be fixed with him just getting up and around. Anyway, he is doing just great! He didn't want the IVs out (he wanted to leave them in forever) and we came home with the leads stickers still on - he wants those on forever too. I did get to bring home some of the adhesive remover so it won't hurt to take them off but he doesn't believe me. His face is a bit puffy again but not bad.

Anyway, I am exhausted! I can't wait to go to sleep! Thanks for all the prayers!

OH - and Thank you, thank you, thank you Sandra and Deanna for watching Riley and letting him stay and play with your Connor's :) He had so much fun and I cannot begin to tell you how very much it is appreciated!!!!!! You guys are AWESOME!

A little kink in the plans...

2008-07-24T20:16:00.001-05:00

Okay so Mr. Can't Ever Do Anything by the Book is being admitted this evening for observation. He was doing great (and mostly still is) but at around 5:30 or so his face swelled up, he had jugular distension, and was very flushed. He was also very, very asleep when just shortly before he was eating and talking. The chest x-ray shows a little collapse of the upper lobe of his right lung - AHHH so this is why his sats are low! They are fairly certain he has had an allergic reaction to something but we don't know what and don't want to risk him having the reaction again once we get home so we will stay. 15 Tower is full so we will stay in the cath lab recovery room overnight. His is not a happy boy but Bammy and Bampa brought toys so he is happy with that.

Just before I came to update he was very insistent that he have some chocolate! Very cute, so I gave him a little bit - hope the docs don't mind.

We have seen so many kids come in, recover, and go home...but, this is his usual MO. After an echo in the morning we should be good to go!

Still doing great!

2008-07-24T16:21:00.000-05:00

Miles is still doing great. He has done a few things to keep us on our toes but overall done really well. he puked after the first bit of water, had a fever of 101.2 and just not too long ago his respiratory rate was at 11 (the stinker!). He has had some tylenol and his heart rate has come back down to normalish so I think he is over the fever. Oh, and his breathing is back up to normal too. He really wants to stay asleep but we will start putting more effort into waking him up so we can go home. his pulse ox has been hovering between 91 and 93% which is lower than I thought it would be but he looks great so I am not worried about it.

I am going to get back to my little man...love to all...

All Done!!!

2008-07-24T12:37:00.001-05:00

Superb was the word used by the cardiologist! He said everything went very well! The hole turned out to be 8mm (I thought it was 5mm), but it is closed now :) He said his conduit looked great! A gradient of 15mm (someone please tell me just what that means, lol!). When he closed the hole with the balloon to test it there was NO change in his pressures! Right now he is in recovery and being a bit of a pill. His pulse ox was 91 when we got in there but should go up when he wakes up all the way - that is lower than his norm before today but we are hoping for 100%. He fussed with the oxygen so they took it off. He is pretty ed but will be better when he wakes up (hopefully). At least 6hrs in recovery and if all goes well then they will send us home. It depends on whether or not he starts puking or anything like that. I took his picture but can't upload from the library at the hospital so those will have to wait. Okay, back to my boy...love to all!

Update :)

2008-07-24T10:36:00.002-05:00

Sean has been updating from his phone - I forgot the library has computers! Okay, so everything is going well. We got an update at about 10:00 ish. They were still doing the hemodynamics portion of the cath (measuring all the pressures and checking out the flow and stuff) and they were just about to get started on the hole closure. I have no clue how much longer but he is doing well. I probably won't update until they are all done.

heart cath :: update

2008-07-24T09:30:00.001-05:00

quick update from the nurse ... the ASD is in acceptable location and they have started the cath

heart cath :: update

2008-07-24T08:37:00.002-05:00

this morning went well miles woke up early about 4am, of course, and with plenty of "i want water". the heavens opened up just as we were headed to the car, but miles stayed dry. once we got here everything went super smooth and miles did great! ms bell his teacher is here and our minister was here to see and pray for him just before miles was wheeled back totaly peaceful from the pre-op drugs

dr. justino will take a few preliminary pics to determine if the ASD is in a good location for the device, if not then it maybe a quick visit today. but no worries since miles stats are not anything critical right now... but keep the prayers coming for our precious boy

Cath update...

2008-07-22T12:48:00.000-05:00

Just got the call, Miles will be first case on Thursday so we will be there bright and early at 6am. He has stayed healthy all week which is awesome! She did mention this time the possiblilty of staying over night which actually makes me feel more comfortable than sending him home afterward. Fingers crossed all will go well (and all will go as planned).

I will probably update again later as he will see the Neurologist this afternoon.

Rescheduled...

2008-07-17T21:26:00.002-05:00

Miles' cath has been rescheduled to next Thursday the 24th. There is a kiddo that needs a cath more urgently than Miles so we got moved. I am okay with that. We have been the one that bumped people off of the schedule so I completely understand where the other family is at (hopefully it isn't anyone that I know).

The next thing is to keep Miles healthy until next Thursday...He has Neurology on Tuesday (at the same time that I will be getting a root canal!) and OT on Wednesday...busy week.

Oh, My Dad will be having a bronchoscopy/biopsy on Tuesday so think good thoughts for him!

Love to all,

Becky

Cute Miles stuff

2008-07-01T21:55:00.002-05:00

Two things Miles said today that were cool :)

We were talking about getting haircuts for the boys and he said "Oh, I love haircuts!"

We went out for ice cream instead. On the way home he was upset that we wouldn't be watching a movie. He said "I like movies cause if somebody has to go potty we can just pause it. Or if I have to go potty, or anybody has to go potty, we could pause it. And I love to pause it."

He is so cute :)

update...let's see...

We had the evaluation for PPCD and he definitely qualifies because of health stuff but they said he is probably too smart. I don't think they will hold that against him - at least I hope not.

The heart cath will be Friday, July 18th. I am nervous, but I think that is normal (right? please say yes :) He is doing really well health wise. He has a bit of a cough so we have been doing breathing treatments to keep him healthy. For the next three weeks we gotta keep him healthy. I will just die if he gets sick and can't have the cath after all this waiting and build up.

Riley is doing very well. He is really enjoying his summer at the YMCA - except the swimming part. He has not enjoyed that at all. He is a bit scared of the water (takes after his mommy - yes, I am 32 and I cannot swim). Sean has been taking both boys swimming and they have been enjoying it - at least I think so - I have not been swimming all summer.

I hope everyone is having a great summer!

Is this just part of the gig?

2008-06-03T09:19:00.003-05:00

I am pretty frustrated right now to say the least but I am wondering if I am justified or not. I might not be. Miles goes to daycare at our church - First Christian Church of Houston (First Christian School). They are a little freaked out by him to say the least. At first they were just a little nervous, as is everyone at first I guess. When the epilepsy diagnosis came they were okay at first. After the big seizure at Christmas they have become increasingly more nervous about him being there. When we sent the Diastat to school they freaked and called a lawyer - saying that administering this medication is invasive and against state law. They don't want to be held liable for sticking something in his butt. I told them, "If you let him die then you will be much more liable than if you stick something in his behind that I asked you to put there". They requested to be trained on how to administer the meds. I searched and searched and finally an angel said she would do it. I paid her $100 and she trained the whole school on how to administer this very self explanitory medication. Either Sean or myself have always gone along on the field trips because we want to be a part of everything. Today there is a field trip to go bowling. When Sean arrived to drop him off they said Miles can't go unless one of us goes along - that it is required for one of us to accompany him on the field trip. Required? Are there any other parents that are required to accompany their child on a field trip? Why do we not have this in writing? Speaking of in writing - they sent me a legal agreement about the medication. It says:
"Rebecca L. Conway-Suggs and Sean Suggs agree to indemnify and hold harmless First Christian Church/First Christian School and their officers, employees, agents or instrumentalities (the "Indemnified Parties"), from any and all claims, liabilities, demands, suits, causes of actions or proceedings of any kind or nature, losses or damages including attorneys' fees and costs of defense, which the indemnified parties may incur arising out of the negligence, error, omission, intentional acts, or other cause arising out of or resulting from the administration of any medication or medical procedure by the Indemnified Parties for or for the benefit of Miles Suggs. The obligation to indemnify and hold harmless specifically includes claims, liabilities, demands, suits, causes of actions or proceedings arising from the negligent acts or omissions of the Indemnified Parties."

I have not signed it and just cannot agree to ANY medication or medical procedure! I am thinking of editing it and saying "...the administration of Diastat as prescribed for a grand mal seizure lasting five minutes or more..." What do you think? If they were to accidentally give him some other child's meds they wouldn't be liable according to that agreement! Should I add something about the school being trained on how to administer it?

Also, I think that the teacher treats Miles differently than the other kids. At his birthday party the kids were very 'careful' with Miles and concerned about him while they were playing. There was lots of hugging and "Oh, Miles!" from some of the kids. I think his teacher may have given the impression to the class that Miles is fragile. I SO don't want that for him!

So here is where I am wondering if I am justified or not in being upset...

Is his health really that fragile? Do I underestimate the situation? I know that he has had several seizures of all different types and we don't really know what triggers them. I know his heart is a big deal. But am I expecting too much from the daycare? From my point of view - they are a daycare - they know that not all children have picture perfect health - they expect to have to give medication sometimes. There are lots of kids with health issues - is Miles' health more of a big deal than a normal kid? (btw, he is such a normal kid!) Is this just part of the gig and I have to get over it and realize that his health will freak people out - and they will be nervous so I will forever have to make concessions?

I know when we first were looking for a daycare people were so freaked out by him and his health. We had one place that looked at me like they were terrified and said "So, he could ACTUALLY turn BLUE?" (I thanked them for their time and left) Have you other heart moms experienced anything like this? Am I totally downplaying his health? Is it expecting too much to expect the daycare to treat him as any other kid?

update...

2008-05-24T07:41:00.003-05:00

All is well. Miles is doing great. Riley finishes kindergarten next week! Can you believe it!? I have started the process to have Miles evaluated for Pre-K (PPCD). (only a year late!)

The latest from the docs is that Miles' spleen is enlarged again - about 50% larger than it should be. We are looking at his blood to see what might be going on. He looks and acts JUST fine! He did puke at the movies yesterday - right out in front of the box office! Oh well, such is life. I am so used to puke and people staring at me and the big puddle of puke at my feet. Who cares :)

No big plans this holiday weekend. I am actually at the office making up some time from yesterday - Riley left school sick with a painful tummy. Seemed to be just fine when we got home. He said he wanted to go outside and play. I told him that if that is the case I will take him back to school so that he can participate in field day. He changed his mind and plopped down on the sofa.

I forgot! Miles cath will be July 14th to close the fenestration. (The schedule hasn't been confirmed yet)

I hope you all have a good holiday weekend...

another seizure...

2008-05-06T12:38:00.000-05:00

I was woken up this morning by Sean saying there was something wrong with Miles. It was 5:28 (I overslept a little). When he went in to check on the boys whenever he got up Miles was face down in a bunch of vomit and had peed the bed. He was rigid and non responsive - staring off. When I got up he was certainly seizing. I called the pediatricians office first - after I went to the car to get the diastat - which I couldn't find. When the guy picked up i said I think I need to call 911. So we did. I had to go wait in the parking lot for them - this complex is sooo big! The guys that showed up seemed competent but for some reason they called another crew to come in. That is when things went south! They took a bit to asses him and get him out to the ambulance. Then they couldn't figure out how much diazepam to give him - I'm not used to working with kids he kept saying. He got on the radio and asked for a supervisor - no supervisor to be found. He tells me that he is relatively new and is used to riding with someone and that the 'basic' that was with us is from another station so they don't know each other very well. His heart rate is about 189 or so and his pulse ox was hovering in the 80's. They put him on oxygen and got an IV started. (still no decision on the dosage) He called someone to get help for what the dosage should be. That guy came back with 1.4ml and he didn't agree! Meanwhile Miles' seizure is getting worse - in full convulsions now - pulse ox down to about 71%. I say - his seizure is getting worse if you are interested! He peed on himself again and then vomited into the oxygen mask. It took at LEAST 45 minutes to leave the parking lot of my complex. THEN the 'basic' goes the wrong way! Anyone from Houston can tell you that from 290 you take 610 to 59 to get to the hospital, right? So this guy takes a side street, 43rd street about 4miles east to I-45, south to loop 610 west - around to where my street hits the freeway! then 610 to 59 to 288 to MacGregor to the hospital - - this took an extra 30 minutes AT LEAST! We called them at 5:35 or so in the morning and pulled into TCH at 7am! Then the 'basic' pulls in the wrong way into the ambulance bay and the guy with me in the back tells him to pull out and re park - I tell them - it doesn't matter, lets just go in! So when we got there the hospital was GREAT! We had Kenya as our nurse who we have had before and she was so great with him. He stopped seizing on his own after lets say 2hrs or so - he never had any meds cause the guy never figured out the dosage! When they asked for vitals he said - Oh, I left them in the truck. He had written them on his glove and then when Miles puked he threw his gloves away!! He had put nothing down on paper - well on the back of the EKG read out he took some notes. I got the to call and complain. He was SO not ready to be out on his own! This is the first time I have had issues with HFD EMS - they were great the last time we had them. The lack of confidence on his part was astounding!

So, to conclude...Miles was observed for a bit, took a chest x-ray to make sure he didn't aspirate, and checked his trileptal levels. All was good - they said it was just a 'break through' seizure. So we are upping his meds again! He is at 4mls now and will go to 4.5 this week and up to 6mls next week. His pulse ox hovered around 90% without oxygen which is low for him but okay. His heart rate never came below 130 which is a bit high, he is usually about 117 or so. He is resting sweetly in my bed and we will follow up with our doc in 2 or 3 days.

I guess he won't be sleeping alone anymore! I would rather he puke on my head than drown in his own vomit!

overdue update...

2008-03-27T17:27:00.002-05:00

man, I am bad at keeping this up to date...

Neurology definitley says epilepsy and they have upped Miles' dose of trileptal once again - from 1ml to 4ml since Christmas. He is doing well on it although he has had a few epidodes of puking from a deep sleep and then going right back to sleep and twitching. We are keeping an eye on this to make sure we don't need to increase it once again.

Cardiology said the seizures are not caused by his heart (yea!). However, the regurgitation in his pulmonary valve has gone from severe to worse and his fenestration isn't doing its job anymore so we are headed to the cath lab to close the hole. His surgery will be in July so we still have a while. His base pulse ox now is about 93% where it used to be 97% or higher. We are looking forward to having the hole closed. Strange right? looking forward to surgery? But it is pretty minor compared to some of the other options and what he has been through already. His conduit is slightly narrowed but not so much that they will need to do anything to it during the cath. Dr. Justino thinks the conduit will last another year - then we can stent it - then we won't need an open heart for a while! He thinks maybe 8yrs since his first one! That would be another 4 years! Sweet!

What else...Oh! Riley is a friggin GENIUS! He took the Stanford test and scored in the 99.9th percentile of ALL kindergarteners in the country...well all that take the Stanford. His average grade score is about 3rd grade! He won a reading comprehension deal at his school and will be going to the city competition in May. He also has passed all of his Accelerated Reader testing and will have his picture on the wall at school. This is a big deal because it is unheard of for a kindergartener to do this. Even first grade is a big deal. Guys - Riley is just so smart it is wild! The other day he was making this whine noise and I told him to stop. He said - but I like to make that noise. I again told him not to make it. He said - But it's my mouth. Oh man am I in for it with that additude :) (I welcome it freely! Bring it on mister!) I need to teach him not to be flippant to his mommy!

Tax Season is kicking my butt so I am off...

no post since thanksgiving?

2008-01-12T10:03:00.000-06:00

What is wrong with me? Well, things have been freaking insane here to put it mildly :) Lets see...the abbreviated version or the super duper long version??

How about the highlights...

Me and the boys went to Kentucky for Christmas - which was awesome until Miles had a really bad seizure that lasted a little over an hour. He had to be in the hospital for 4 days. They had to intubate him after his airway collapsed from all the drugs they gave him to get the seizure to stop. Then they paralyzed him because he was still seizing and fighting the vent. Then we were flown by helicopter to the children's hospital in Louisville. We will see the neurologist in Houston on Jan 29th and Cardiology wants to see him on Feb 5th. During the seizure he was a deep blue color but breathing just fine - well, until the meds collapsed his airway - but until then he was breathing well. his hr went up over 200, pulse ox was barely 80% on 3liters of oxygen and his bp was super low (very scary!) The current super scary thought is that maybe his heart triggered the seizure. yikes!

I will have to post cool pics of the snow we saw!

We ended up flying home and leaving our car there and my mom is graciously driving it down here this weekend.

Also, me and my husband have decided to divorce. We have to file still but it is certainly going to happen. We are working together very amicably to do what is best for our kiddos. I think we actually will keep the house we rent and then rent an apartment. The kids will stay in the house and mom and dad will switch out when it is our week. Does that make sense? Pretty strange I know but it feels like a good way to keep it stable for the kids and to 'ease' into the divorce. It has been hard coming to this decision but it is what is best for everybody.

Other than that, we are great! (can you hear the sarcasm?) Really, we are okay. We are both looking forward to moving on and starting over. It is pretty strange how okay we both are with it but it is good.

Later everybody...I will try to not stay away so long next time!

Happy Thanksgiving!

2007-11-23T11:45:00.000-06:00

I hope everyone had a happy thanksgiving and was able to enjoy some time with friends or family yesterday. And if you are shopping today - what the heck are you thinking? Some of the stores in Houston opened at 4am! Are you kidding me? That is crazy. Having worked retail at Christmas you couldn't pay me enough to be out shopping today!

We spent the day with Sean's Dad and Step mom (and lots more family). The boys LOVE going to grammy and grandpa's house and playing. Here are the pics from the day.

Both Riley and Miles like to take pictures so there are some different approaches to photography in this album...

Thanksgiving

Everyone have a great 4 day weekend!!!!!

I forgot...

2007-11-15T21:11:00.000-06:00

The Holter was completely normal!! (very cool)

We went to the renal specialist this week. He is now 94.7cm!!!!! (up from 88cm in April) So we are growing!! Also he was 14.5kg! (up from 13 - all year) We are happy he has decided to grow. There have been no seizures, only mild pukes, big big attitude, and a cough. He has been on breathing treatments 4 times a day which is a drag but he is a trooper and his chest is sounding clear! Thank goodness! This time last year we were already on our third case of pneumonia. Found out this week that there is Strep going around the daycare but supposedly he doesn't 'hang out' with that class - hopefully those germs will stay away.

Geez! I almost forgot to say...in 6 months we will do a trial off of the blood pressure meds to see how his blood pressure does...fingers crossed! (initially the doc said he would have to take captopril for 5 or 6 yrs because it is scar tissue that causes the high BP and it has only been 1 yr- I guess we'll see)

hugs to all our heart friends!

New Meds Follow-up

2007-10-28T07:37:00.000-05:00

So the medication seems to be working wonderfully! He has had no pukes/pass out episodes since we have started taking it! We are so very happy about that :) He did have one giant puke at school but who knows what that could be from. It is hard to distinguish between his pukes sometimes. The first day we took the trileptal it made him sleepy but he has been fine since.

Halloween is around the corner and Riley will be superman and Miles will be batman. They dressed up yesterday for the It's My Heart 'Boo'l-a-thon. They were so super cute! The whole event went really well! We had about 100 people (we could have had up to 220 in the center, but 100 ain't too bad). The costumes were great and everyone seemed to really enjoy themselves. Sean and I did not dress up but alot of the other grown ups did. Corrie and her husband were Al and Peggy Bundy, Sharon and her husband were Homer and Marge Simpson. They looked great! Since I didn't celebrate Halloween as a kid I never think of dressing up. I have done it a few times over the years but not this year. I think the last time I dressed up I was cat woman, Sean was Robin, Riley was batman (same batman costume as Miles) and Miles was cat baby. By cat woman I mean black outfit and ears...not like Halle Barry or anything.

I got to see a glimpse of the It's My Heart Cookbooks yesterday. I can't wait to get mine! They are only $10, not bad. If you are interested go here to check them out or order your own. These are definitely going on my Christmas list this year! :)

Answers to Questions...

2007-10-22T10:56:00.000-05:00

Recently the puking and getting tired (seizures) have been more frequent but I personally think he has been doing it since he was 6 months old. He had a day where he had 6 episodes of puking and passing out. Then on the 6th one he stopped breathing, pretty scary. The EEG then was normal.

I think it is a product of his CHD because it is a vessel, I don't have the cardiologists opinion yet.

We have a diagnosis...

2007-10-17T12:30:00.000-05:00

Epilepsy. Interestingly enough it is a 'product' of his CHD!!!!! He has a congenitally underdeveloped vessel in his right temporal lobe where the seizures are originating from. I guess because it is part of his vascular system it is CHD related. (that is how the Nurse Practitioner put it). An incidental finding is that he also has a very small cyst next to this vessel but they don't think has anything to do with his seizures. He will start Trileptal tomorrow (the pharmacy has to order it). His seizures are on both his left and right side which (she said) goes along with epilepsy - something about if it were only on one side it wouldn't be epilepsy...I don't know. Anyway, the meds should take 2 wks to work but will make him drowsy and possibly dizzy. It won't interact with any of his other meds but we will need to monitor liver function I believe (as with most epilepsy meds). I just realized that because it is caused by a congenital defect he won't ever grow out of it...that sucks.

So I guess I have to get him a new medic alert bracelet...

Never a Dull Moment at the Suggs' House

2007-10-13T11:15:00.001-05:00

So we got the results of the EEG but are waiting to talk to Neurology to get some answers so we know what the results mean. We have an appointment on Wednesday of next week - the 17th - with the nurse practitioner. (an MD wasn't available until Nov. 1) After we have this appointment we will hopefully have some answers and then I can spill the beans.

This week has been fun, well not really unless you are into kidney stones. Tuesday night Sean comes home from work and said his stomach hurt which is pretty common given his GERD and such. Then he says he can't stand up and he has a fever of 101.7. The pharmacy recommends pepto so he takes some of that. He is literally shaking from the chills and hot to the touch. While he is hanging out on the couch and I am checking my email I start to feel a familiar pain. I think - oh, I know what this is...kidney stone...ouch! So I go potty a couple of times and out it comes, it was a small one (only 2mm). Whew, all is better! Off to bed for me and Sean sleeps on the couch.

The next morning I take the kids to school and Sean stays home. He said he didn't get off of the couch even once and didn't even turn the TV on, he felt so bad! I called, he didn't answer. A friend at work asked how he was doing and I said "He is probably dead on the couch, he won't answer the phone" But he said he was in too much pain. When I got home from work he said take me to the hospital. So I did. We got right back in a room which is amazing! They took some blood and urine and we watched Family Guy (it seems the only time we get to see this show we are in the hospital! It is the only good part!). So the results come back - he has a severe kidney infection...off to Cat Scan. He's got 2 kidney stones! They gave him some good drugs and sent us home after midnight. (the next day I worked 12 hrs after only 4hrs of sleep...so not used to that!) He saw the urologist on Friday and he thinks Sean passed a stone on Wednesday. So one down two to go!

Things calmed down after that. So now Sean has two kidney stones in his right kidney and I have 'several' in my left...but none on the right, well not anymore :)

The boys are doing great btw...no pukes this week at all for Miles!!! Thank God!

Soccer weekend...

2007-09-22T18:39:00.001-05:00

Miles finished his holter today and we dropped it off with the valet - yes, the valet - they have a 'box' they said. Anyway, I have some great pictures from the last few days...

Suggs 9/21/07

Miles and Riley both had their first soccer games today. They were awesome! Miles played a bit and got worn out before half time, or right at the half. The shirt came off and he was ready to come home. It was nice today but the sun was really hot!

soccer fun

The cutest thing in the world is to hear my boy say his own name! We have tried for so long to get him to say "Miles" and I just love hearing it! Now we have to work on Vincent...his middle name.

M.I.L.E.S

I will let you all know about the holter results when we get them. I am pretty sure they will be fine! No pukes or falling down all day. He was quite sweaty for most of the experience but that is normal Miles.

A Holter Monitor...

2007-09-10T18:44:00.001-05:00

Talked to Cardiology today. They want to do a Holter just to be sure. That will be on the 21st. The cardiologist seems to think it might be neurological in nature. We have an EEG on Oct 3rd but the pediatrician might want to move it up. He did okay today but Sunday he fell and said his legs didn't work anymore. He told me today that he needs new knees because sometimes his are broken and don't work. It is all very strange. The pc did say that his heart looked *so good* in April when we saw him last that he would be surprised if things changed this quickly! That is great! Not only is he a good lookin' kid - he's got a good lookin' heart :)

I will keep you posted...

It's a 3 out of 6...

2007-09-08T12:36:00.000-05:00

Went to the doctor this morning. She says that to her his heart sounds the same. Here are the technical terms/numbers. She said the murmur/gallop/swoosh is a 3 out of 6 and that months ago Dr. Tiwari had it as a 3 out of 6 also. There was a note in between those two notes in his file - there was one doc that had his murmur as a 2 out of 6 but she wasn't concerned with that because she and Dr. T agreed. His pulse ox was 96%, heart rate 118 - which is good. She checked his sugars from the last labs he had done and it was 86, which is normal. She said to be sure to talk to the cardiologist on Monday, if not before. If he has this happen again (weakness, easily tired, sweaty, inability to stand up) this weekend to talk to TCH on call cardiology. Sean said to just take him in if it happens again. She said to be sure to explain any changes in his sweating (he has always been sweaty - the only difference is that it is now his whole body instead of just his head - has been that way for months). He is putting together a puzzle with Dad right now and looks/feels great.

Another thing the doc said is that she could NOT feel his spleen. His tummy was tense when she was feeling it because her hands were cold but I am glad she couldn't feel it. I think I know his gut pretty well by now but maybe what I felt was stool (yucky but likely, he is full of it).

We are relieved but cautious. We still plan to go to the It's My Heart - Noah's Ark Water Park event tomorrow. Great - Mommy in a bathing suit - fun! I think the anxiety is already setting in...

New developments?

2007-09-07T17:39:00.001-05:00

Talked to the doctor yesterday. She said to call cardiology today. So I called Dr. Justino and he is off on Friday's so he will call me back on Monday. I then talked to the *new* pediatrician Dr. Propst - would you believe this is the first time I have talked to her? She was very nice. She agreed that I should call Cardiology. About the spleen she said to look out for any unexplained fever or rash which I will. There hasn't been anything so far.

I am, however, a little freaked out right now...When I picked Miles up from preschool the teacher said that this morning he did the following...After 15 minutes of play time outside he was very sweaty and clammy. She took him inside, he said he was tired. He sat for a few minutes and then tried to stand up and couldn't. She said he fell down and then he tried again and he still couldn't stand up. She said she didn't call me because his color looked good. She checked his fingernails, toes, etc. but color looked good so no call. She said he rested for 'a while' and then was very hungry. She said he ate more today than any of the other days he has been there. I am not upset that she didn't call - absent the comments from the gastro this behavior would not be that out of the ordinary for Miles. Well a little out of the ordinary but would be okay if it was an isolated incident.

He seemed okay when I went to get him, aside from red circles under his eyes. He was hopping and playing and running and still is. He has been incredibly thirsty. I called the pediatrician again, just to make sure. They just called and said to watch him and if he does it again then...the phone got cut off!!!!!!! ARGH!!! How frustrating! It is after hours and I only get the recording. My guess is that if he does it again to go in tomorrow - they have office hours on Saturday.

They just called back - the doc wants to see him tomorrow morning at 9am. Off to make dinner...

Cyclic Vomiting...sounds fun huh?

2007-09-05T20:55:00.000-05:00

I just watched him take his Captopril all by himself!!! What a big kid he is becoming!

Okay, on to the update...

Miles saw the gastro doc today. He said a few things...one that he thinks Miles may have something called 'Cyclic vomiting' which means that there is something neurological that causes him to puke so much. OR that he might have epilepsy. He said we will wait and see what the EEG results (which by the way is Oct. 3rd) say and go from there. He said there are two meds that can be used to treat cyclic vomiting - both of their names are escaping me right now. One is an antidepressant that controls the vomiting part of the brain (if that makes sense - I just got an image of a little brain vomiting...) and the other controls it in some other way that I can't remember. It is getting late. The other thing that Dr. Krishna said was that even though Miles has only gained 600 grams since May that that is okay. And...drum roll...He has grown a centimeter!!!!!! Woo Hoo!!! 91cm (91.7 by the measuring device there!!!) Maybe he has decided that it is okay to grow...

and the third thing he said (and fourth) was that he could feel Miles spleen again :( He could just feel the tip and from Dr. T said before that is about 5 times normal size. Then he listened to Miles heart and said, oddly - "When is he scheduled for his next surgery?" (TWO yrs from now is what I wanted to say!!) I said, He's not scheduled right now - his PV regurgitation is severe and he still has his fenestration... He says...'Oh, that is what i hear then'

All you heart moms know how I am feeling right now right? Does it sound different to you Dr. Krishna? If it does, do we need someone else to look at it/listen to it? Does it sound louder? Or quieter? Or just different? What did you think you heard? I am so full of questions for him really...BUT...he is the GI doc, not the heart doc. He saw Miles three months ago - can he really remember what his heart sounds like??? (the answer is NO, for my sake...)

First Day of School...

2007-09-05T07:12:00.000-05:00

Riley had his first day of school last week. He is such a big kid! He loved it and was sad when I came to pick him up. I am glad he doesn't have separation anxiety but I wanted him to be happy to see, even if just a little bit. He has had lots of fun! His favorite part is after care but his favorite part of the day before after care is recess...what a normal kid he is :) He has made a friend - Isaiah. I am glad he is making friends. We have the open house next week so we get to talk to the teacher a little more

Miles started Pre-K yesterday. Dad was concerned that there would be lots of screaming and crying. When they got there Miles ran into the gym and starting kicking balls and riding bikes. Sean walked out for just a sec to write a check, came back and he was gone! He was already off with the teacher going potty. He had a great day! He liked it alot and was sad to go home. When I got there he said, "Mommy!" ran to me and said with a frown, "I didn't want you, where is Daddy?" I know I am not the favorite but come on! :) He ate like a champ (I knew he would) and had no potty accidents. All in all it was a great day!

Miles' EEG will be Oct 3rd. I have to keep him up late and wake him up early - that should be fun. Today we will go to the Gastroenterologist. Last time we went he was unhappy with Miles' digestive system (I am sure Miles isn't too happy with it either). He said that if things hadn't improved then we would be doing another gastric emptying scan (it would be his third). I am not sure if things have improved...bad mommy! I know he has had some poops-pukes and some regular pukes but not alot. He hasn't brought up much undigested food which is good and could be an improvement. He is also potty trained now which is HUGE! Hopefully we can put off the emptying scan, he probably doesn't need anymore nuclear medicine :)

It is always something...

2007-08-23T10:20:00.001-05:00

On Saturday Miles started to exhibit behavior that has us a little worried. Riley, Daddy and Miles were cleaning up a puzzle. Miles was putting the pieces in a potato chip bag instead of the box but wasn't aware that he was doing this. Sean told him to put them in the box and he said he was. Then he got this strange look on his face, stared off for a minute, vomited, became listless/lethargic and went to sleep for a long time. While he was sleeping he woke periodically but it was difficult for him to wake up all the way - that took a long time. Add a migraine in there and this behavior is just like Aunt Christy when she has a seizure (she has epilepsy). So we are concerned. We called the doc and we were seen yesterday. She wants to get an EEG and we did some blood work to make sure it isn't anything like his electrolytes or sodium being off. She said after the EEG comes back that we will talk to Neurology. She said the EEG might be as much as 4 weeks out but if the behavior continues or worsens in anyway to call to move it up or if it is really bad go to the ER. Flash back to Nov 2004 and this is the EXACT same behavior Miles had 6 times that day before he stopped breathing/turned blue - twice. I tried to tell them then all of the family history. They did an EEG then and it didn't show anything. He has had things like this happen from time to time - this is the first with the confusion. He has puked more times than I can count but many of those times were preceded by a strange blank stare an d followed by a long nap. I don't know if they are related or not. The doc did worry me about one thing - his MRI. Miles got an MRI of his brain last fall that was ordered by the Developmental Pediatrician just to make sure everything was okay. When Dr. Miller and I talked about it yesterday I mentioned that when given the results the subdural hematoma he had when he was born was mentioned. She said it should have absorbed into his brain by now and shouldn't show on an MRI. She said she would review it and see if we need another MRI. That concerns me a little bit. I LOVE Dr. Miller! Although sometimes she has a way to getting me worried about things that I may not need to worry about. She says just what she is thinking when we see her - like the time she said that Miles should have outgrown all of his digestive stuff by now and that most kids his age would have outgrown this stuff by now. Dr. T told us not to worry about that and that it is okay that he hadn't outgrown those issues. But then the GI said he might not ever outgrow it...

Anyway on to the good news - Miles starts preschool on Sept 4th!!!! We are super excited! We just hope that he can stay healthy! He already started with his normal cough this time of year so I started him on his pulmicort yesterday, hopefully that will help. I wonder if I should go ahead and do the Xopenex too or wait until he is sick? After he had the pulmicort last night he got a little rash on his back - don't know if the two are related or not. He spent a good amount of time running around on a playground last night at Riley's new elementary school so it could have been from the heat. The rash was still there this morning; we are keeping an eye on it.

Please keep Mason in your prayers - he has his Fontan today.

Normal!

2007-08-11T08:53:00.000-05:00

It looks like Miles' tests came back NORMAL!! I am very pleased! We do have to repeat the metabolic panel because it appears as if the sample was left to metabolize before they tested it. I hate for him to have to get poked again because someone screwed up their job! It is labcorp and my husband and I have decided to call them labcrap. Our other lab choice is quest and they are the folks that twisted Riley's arm for blood and told me that they were going to have to give him bruises. I came this close to jumping out of my chair...

The blood draw will happen at TCH so worries there. Reggie (I think that is his name) does a wonderful job with Miles. On all other fronts we are doing exceptionally well! Riley will start kindergarten this month and Miles will begin pre-k very soon. Yes, I am going to cry. On the lack of growth...our pediatrician told us previously that based on Miles current height he still falls within normal range for his genetic potential. According to mine and Sean's height the shortest he should end up being - provided he starts to grow - is 5' 5". Not too bad but is quite short for a man.

One last thing, Baby Isaac did become an angel shortly after I posted for prayers. Please keep his family in your prayers.

Please pray for...

2007-07-23T20:52:00.000-05:00

http://babyleino.blogspot.com/

This little guy needs lots of prayer.

Overdue update...

2007-07-23T20:06:00.000-05:00

I have not posted since May. I started a carepage for Miles...click here to see it. I have been better at updating that. My family requested an email when I updated...

Here are some recent pictures. Everyone is doing very very well. Miles did stop growing and we are awaiting the test results from the endocrinologist as I type this. They are testing for a thyroid problem, growth hormone deficiency and/or Celiac disease. I am hoping that they find nothing - those all suck! I will update with the results when we get them. Both boys have a dentist appointment this week, that should be fun! (ha!) We practiced dentist tonight so that should help. I am a big fan of practice.

We do have some big news that I have not posted on the carepage yet - you get the first peek at it! Miles has been potty training this week and last! He is doing very very well!!!! He has a hard time with public potties but is doing beautifully here at home! He is singing behind me - "This is the day...This is the day...that the Lord hath made..." I love it!!

Here is a conversation between Riley and myself from last week:

Riley: "Mommy, Alex (a heart friend of ours) saw Miles' bald spot."

Mommy: "That is okay, no big deal" Riley: "Does Alex have a bald spot?"

Mommy: "Nope." Riley: "How did Miles get his?" Mommy: "After Miles' surgery he got a big sore on his head and the hair fell out."

Riley: "Do I have a bald spot?" Mommy: "Nope." Riley: "Did I have surgery when I was a baby?" Mommy: "No. Remember Miles was missing a piece of his heart so he had surgery to put the missing piece in..."

Riley: "The cow piece right?" Mommy: "Yes, the cow piece."

Riley (with a grin): "Mommy...Miles is a...Cow Boy."

Priceless!!!! I love it!

Miles quote - we were talking about how someone was 'just' like him

"No one is no one like me!" (you got that right mister!)

Happy Birthday Miles!!!

2007-05-04T00:24:00.000-05:00

Make an on-line slide show at www.OneTrueMedia.com

Cardiology Check-up

2007-04-03T15:05:00.000-05:00

We just got home from our heart check up. Miles did so well - I am SO PROUD OF HIM!!! He stayed so still throughout the whole echo, he was amazing! We practiced again last night - it paid off! He did such a good job with the EKG too! Last time we went they didn't get an EKG because he screamed too much. He was a model patient today! If you have Child Life at your hospital, you should really check it out! It has been a life saver!

Down to the results...The regurgitation in his pulmonary valve has gone from moderate to severe. He said not to worry about this as children can have pretty bad regurgitation for a long time before it does anything to their hearts. The conduit has "a little bit" of narrowing, but again we shouldn't worry about this. The pc said we could get a couple more years out of both the conduit and the valve. The fenestration (or hole they made in his heart during the last surgery) is 5mm - a medium size hole. He said that too can stay a little longer. He said it looks like Miles can be surgery free for a couple more years!!!! We are so excited about this! He was such a good kid today, the reward he has requested is cake - so cake he shall have :)

Cute Miles sayings: When we pulled into the church parking lot on Sunday I said, "We are here at church" Miles says "This place makes my heart happy!" WOW!!! Today when we got to the hospital he says "This place makes my heart happy!" I explained to him that both of these statements are true!!! So today all of our hearts are happy! I was scared that they were going to say things were bad but we are so glad to not need anything for a while. Lets hope it stays that way!

They did have one concern...This time last year Miles was 88cm tall. Today Miles is 88cm tall. He has not grown even one cm in a whole year!! He has gained weight but not gotten any taller. He has gone from the 50th percentile in height to below the 5th. We have to keep a close eye on this or we will need to go see an endocrinologist to test his growth hormones. He is pretty short...Will be three next month and is still in *some* 18 month pants but mostly 24 month.

Thanks for checking in on us! We love to read your messages :)

The Suggs bunch

Practice Echo...

2007-03-26T20:42:00.000-05:00

Miles' heart check up is on April 3rd. It feels like we have been waiting for it forever! His last echo was November 2005!!!! Can you believe it? We went in April 2006 because he started to crack when you pick him up but the pc thought he looked so good we could wait a whole year to come back. So now we are approaching 18 months without an echo. I am a little worried, just like any mom would be (especially us heart moms, we get trophies for worry we are so good at it). So tonight we did some fun things. We practiced an echo and an EKG. It's My Heart had a child life specialist come and talk at our monthly meeting last month about testing and blood draws and that sort of thing.

We brought home EKG stickers, lubricant, heart monitor stickers, band aids, and a WONDERFUL doll called a shadow buddie. It is a doll with a scar on his chest and a scar on his heart. He even looks like Miles, except this one has blue eyes but has the red curly hair - he is perfect! We like him alot! Miles even sleeps with him. Well tonight his buddie had an echo (or a goo test) and a sticker test (EKG). Riley helped. He let Miles use the roll on deoderant (ultrasound probe aka camera) to take his picture. Then Miles let Riley take his picture. Then we put stickers on and practiced FREEZE! 1 2 3 4 5...They did great! Miles didn't really freeze completely but good enough for an EKG. He didn't scream when we took the stickers off (didn't do anything really). SO, SO proud of them!!! We are going to practice again before the appointment and hopefully we will do okay. This is the first unsedated echo - I have heard horror stories about how it could go. His appointment is at 9am - I could just bring him hungry - just in case.

I didn't forget about you...

2007-02-22T22:37:00.000-06:00

Hi there everyone. I didn't forget about my blog, promise. I started a carepage because my family will check it if they receive an email that I have updated. Oh well, not everyone has bloglines...

So here are my super cute kids! This is a picture that they gave me for my birthday (yesterday). I just love it, they are the best! Thanks Abuelita for doing that, it was very sweet.

The It's My Heart Awareness Walk was a success!!! It was awesome in an out of body experience kind of way. In that there were all of these wonderful people there having fun, getting to know one another, sharing their stories, their children playing together...And I had a part in bringing them all there. WOW! That is so big! In comes the out of body experience part. It was great. The only part that I didn't like was when the health department got there to do their inspection (I was in charge of food). That made me a little nervous, but we did okay.

Thank you, Thank you, Thank you to all who donated to the walk and helped make it such a big success!!! The total is upwards of $24,000!!!!! If anyone remembers, that was more that I was paid when I worked for Harris County!

off to bed for me...

Becky

Okay, Okay so that wasn't an update...

2007-01-07T16:48:00.000-06:00

...But! Be sure to read the post below about the It's My Heart - Heart Walk on February 17th... www.itsmyheart.org

All is well. Thanksgiving in KY was great, had a blast. Christmas was great, got completely spoiled by Santa (as it should be). On to the BP...The current thought is that Miles has secondary hypertension. There is more testing to come. He did a great job at the appointment (yea right! - there was alot of crying, screaming and laying on the floor). They took blood and we have more testing soon, a renal scan sometime in January. Then possibly medication to control it.

The funny part...I had to tell the doctor he was wrong. I didn't like to do that, really. I didn't want to be THAT mom. He had a student in there and he told her that Miles' heart makes all the lovely noises it does because his BT shunt is still open AND that it goes from his Pulmonary artery to his Aortic arch. SO...I had to say, "Actually Miles had a modified BT shunt and that went from his Super vena cava to his Pulmonary branch artery and they closed it during his repair. The noise you hear in his heart is due to his conduit that has moderate regurgitation and he has a fenestration." I really didn't want to do that but I had to. Plus - how can you (me) expect a doc to know everything about my boy the first time he sees him - I can't that is why I don't hold it against the doc - for Renal he was well informed about hearts, that is a good thing.

That is it with us. Hope all is well with you and yours. Happy New Year!

Happy Birthday Chris - my biggest sister :)

Update!

2007-01-05T15:25:00.000-06:00

Dear Family & Friends,

Hi everybody! As most (or some) of you know I am a board member with an organization that I just LOVE called It's My Heart, Inc. We provide CHD families with non medical support, we have events and we provide about 1,000 comfort bags per year to Texas Children's Hospital.

That being said, we are having our very first Heart Walk!!! IMH Heart Walk, 2007, Noah's Legacy. Sadly, the president of our organizations son, Noah passed away in May 2006 so the walk is in his memory. The walk will be February 17, 2007. Funds raised through the IMH Heart Walk support community awareness and help to provide comfort bags and programs to families while they are hospitalized.

From the heart,

The Suggs Family

You can use Paypal, a quick and easy way to donate. Click here and click on the link for Donate Paypal. Please be sure to include my name.

Perfect moments

2006-11-30T22:29:00.000-06:00

Have you ever had one of those moments with your kids where everything is perfect, just as it should be. Not only do you not want it to end but you wouldn't change anything in the world at that moment...perfect...overwhelming love.

One night when I put Miles to bed (in my bed) we lay there on the pillows looking at each other. I said, "I love you." Miles says, "No" with a smile. I say, "Can you say love?" "No," he says. Then looks up at me and says, "lub mama," and smiles. He pointed to my nose and said, "mama noh". Then to my eye, "mama eye". Then my hair, "mama..." (he can't really say hair yet). We giggled, cuddled, hugged...perfect. He reached up and made a kiss sound with his mouth, which means thank you for him (his *very* short version of sign language - it went from the real sign of thank you to blowing kisses and now just kiss noises). I said, "you're welcome baby, thank YOU. Mama loves you". Then he gave me a kiss on my cheek.

It is moments like that when I am thankful for every single doctor that is in our lives (especially those that have saved his life), for every nurse that has ever helped him, every PT, OT and ST, everyone that has helped bring our precious boy to where he is today...here...in my bed...being silly.

This song (below) reminds me of every time I have had to turn him over to an anesthesiologist for surgery, or watch him in that bed as he recovered. Everytime he has had some test done that he hates or gotten blood drawn or a shot, every time he has looked at me and said, "ow mama"...all of those necessary things that he (we) hates. All of the parents that want to run with their child instead of hand them over, that is what I think of. After that perfect moment with Miles at bedtime, those are the things that I think of when I hear this song.

Chasing Cars

We'll do it all
Everything
On our own

We don't need
Anything
Or anyone
If I lay here
If I just lay here
Would you lie with me and just forget the world?

I don't quite know
How to say
How I feel

Those three words
Are said too much
they're not enough

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

Let's waste time
Chasing cars
Around our heads

I need your grace
To remind me
To find my own

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Forget what we're told
Before we get too old
Show me a garden that's bursting into life

All that I am
All that I ever was
Is here in your perfect eyes, they're all I can see

I don't know where
Confused about how as well
Just know that these things will never change for us at all

If I lay here
If I just lay here
Would you lie with me and just forget the world?

Happy Birthday Riley!!!

2006-11-20T20:38:00.000-06:00

5 years old!!!!

http://picasaweb.google.com/becky.suggs/RileyS5thBirthday

Riley is 5 yrs old today and we are so proud! He really grew over the weekend as you can plainly see in his picture. There must be a BIG difference between 4 and 5! He had a great Superman party on Saturday with lots of friends and got a ton of superhero stuff! It has (of course) been non stop play time since! Thanks to everyone who came, we had a blast :)

On the Miles front...his BP on thursday, that I didn't think we could count, was 150/110. He was screaming but the ped said that it is high even though. His BP friday was 102/78, still high. We got a referal to a renal specialist or nephrology (if we must add another ology) and we were told to see the pc. The other things he is doing are: quick to sweat while playing or just sitting watching TV. He sweats all the time, just faster now. While sweaty, he gets clammy hands and face. And while playing sometimes he closes his eyes real tight and shakes his head a little, then opens his eyes and looks at you strange (like he is dizzy). Then today...He woke up really puffy. He didn't look like himself but was close to back to normal by lunch time.

I played phone tag with the pc today because I had to leave for an appointment - ovary is fine - no change - take b/c pills for 3 months to shrink the cyst - no biggie. When the ped heard that he was puffy she said take him to ER only if it is truly edema. Because he went back to normal, we decided that it wasn't really edema so we didn't go. I will start the game of tag over tomorrow. I am nervous with us leaving town on Wednesday with his latests 'developments' but I am sure we will be okay. There are lots of hospitals in between here and KY. Maybe we should avoid certain states (Arkansas for example) but we will be fine :)

And we are off...

2006-11-15T15:33:00.000-06:00

our rockers!

Not that that isn't true but it isn't really what you are here for now is it? :)

We are off ... of the steroid and the antibiotics and only using the Xopenex when needed. The last few nights Miles has not been himself...or has he been himself and he is much more rotten than I remember. We follow up on Friday. The only remaining concern (beside the ones I have every day - all day) is his blood pressure. At the MRI, his BP was 132/63. She checked it again and either got the very same numbers or something very close to it. It was passed off as nerves. His BP has always been strange but is always passed off as nerves. So I will have it checked a few times in different situations to see what we get. I don't want to have yet another 'thing' for him.

We have our 2nd opinion for the gastro issues on the 4th and try number 3 for the MRI on the 12th.

But in the mean time...

We are off ... to Kentucky! I am so excited! I get to meet my niece Sydney and meet my brother-in-law Dustin. I am super excited about seeing my family and being cold! I have already figured out that at my sisters house Vanderbilt is the closest/best hospital for Miles and in Radcliff/E-town without question it is Kosairs. But hopefully we won't need them :)

I hope everyone has a safe and happy (and filling) Thanksgiving!

Update...

2006-11-08T21:46:00.000-06:00

Today started at 4 am when Miles needed the breathing treatment. Next I had to be at the Woman's Hospital for a (yucky) ultrasound of my stupid enlarged ovary. That went well too. The radiologist didn't come and talk to me this time. The tech said, "They'll come and talk to you if you have something life threatening or something like that." Me - "She came and talked to me last time." Tech - "Oh, well, it looks better this time." (Does this mean that it was life threatening last time?) Then my docs office called and said that my results won't be back this week! Must be okay, that is not a bad thing. Maybe all of my pain was my lovely little cyst bursting.

On to Mr. Miles...When he had his breathing treatment this morning it sounded like he was trying to breathe through something like fiberglass - if that makes sense. And my mother-in-law said that before his Noon treatment he was breathing rather quick and shallow. BUT...Daddy took him to his appointment today and we did not get admitted. Dr. Tiwari said he sounded better to her and his pulse ox was 95. Continue with the Xopenex and start to wean him off this weekend. Finish the steroid - putrid stuff! Follow up the week of Thanksgiving. We are SO glad to hear this!!! He is such a trooper! He took his prednisolone tonight so well! He puked after the first drop - I am not kidding, it was only a drop. But I got him some water and we did it in 3 shots! I am so proud of my little man and how well he does with his meds! He has had such a rough week. Hopefully we will get some sleep tonight. One thing the doc said is that the cough will last at least another month (that stinks!). Today I had a familiar feeling...well a few of them. You other heart parents can probably identify with this. The build up - stress, stress, stress...worry, worry...what if...why...argh!...apprehension...on edge...exhaustion...(enter good report from doctor)...elation...then a bit of unexplainable something...probably a buildup of the adrenaline and stress...extreme exhaustion...then guilt for wanting to have him admitted...adoration for my strong boy...disbelief at how much crap he has been through and can still look at me and smile and say "Mama ome now!" and give be big hugs. I am so proud to be Riley and Miles mom!

btw...Riley will be 5 on the 20th!!! We are so super excited! Bring on the Superman party!

Yup, it's pneumonia...

2006-11-07T16:14:00.000-06:00

So Friday after I posted Miles spiked a fever of 102.9. We went for our follow up for the ear infection at 4pm. The ear was worse! So we got some augmenten. She heard a little something in his lungs and sent us for a chest x-ray. The radiologist said he has a 'bit' of pneumonia. So we got some zithromax. We watch all weekend, waiting for something to get better. Well, he never had a fever again, that is good. Sunday night he is making me crazy with his breathing. He was retracting a bit and his breathing was a little labored. But then it would get better and he would be fine for a while - even sleep a little. I wanted to call the on call service, Sean didn't want to because they would just send us to the ER and the risk of exposure to disease there is much greater than our living room. So when we got up in the morning I got him dressed and had him at the pediatricians when they opened. (the last time I did that, he stopped breathing right in her office) They saw us, no problem. His pulse ox was 92. She (Dr. Miller) heard some weezing in his lungs so we did a breathing treatment. There was only a one point change in his pulse ox but she said he sounded better. She sent us home with Zopenex. (Boy does he hate that!) She said that he also has bronciolitis along with the pneumonia. She said we are on 'max out patient support' and that Miles was at her 'max level of comfortable' Anything else and we take him to the ER to be admitted. I wish they hasd just admitted us. Today we follow up again this time with Dr. Tiwari (that is three days in a row for anyone who is counting). We do 2 breathing treatments and she can hear some improvements in the lungs and then gives a steroid shot. And we have to follow up again tomorrow! It just makes me nuts! It makes me nervous as hell when docs say things like 'max level of out patient support.' So if you could, keep my little man in your prayers. His lungs need to clear of infection and his sats need to get better! (the lowest was 89. His norm is 97) I know that 89 to some is fantastic and there was a time that 89 was great for him too. Hell, there was a time that 70 was great for him. But, he is supposed to hold a pretty steady 97, something he has not really done this whole year. We are seeing a trend of lower sats for this year, which could mean that there is intervention in our future. That is something that I don't want to think about, we still have 2 1/2 years until we need to think of that!

Second Try...

2006-11-03T11:33:00.000-06:00

Today was the 2nd try for Miles to have the MRI that was recommended by the Meyer Center. It too was a no-go! His pulse ox was 93% and his temp was 100.1. They were not happy with either of these things. Also, is BP was 132/62 or something like that. Pretty wacky for him. So here we are at home. His temp is going up...101.8 last check. And we have an appointment with the doc to follow-up for an ear infection today at 4pm. The MRI was rescheduled for 12/12...we will see. I am sceptacle to say the least. Maybe 3rd time is the charm.

We are off to naptime...

Just where in the world have you been Missy!?

2006-10-25T00:03:00.000-05:00

Let's see, where to start. There were 2 tax deadlines and that says alot about why I have not been online. (the 112 unread emails in my inbox does too - down from 146, btw). Sean spent a week in San Diego, a week 'going it' on my own. All in all, I would call it a success (everyone lived, including me).

Miles has been a bit of a puzzle lately. He has had a cough now for 5 weeks, well approaching 5 weeks (it started Sept 22). We went to the docs to check it out. It was fine, just a cough, no biggie. Then, on Oct 3rd, his MRI was rescheduled because a 'team' of anesthesiologists were nervous about the cough. We decided that if they were nervous, maybe we should be too. Went back to the docs. This time we left with an antibiotic, just in case. After 10 days of the meds, no change. I called last week to give the 'State of Miles' to the nurse. She says come in and get it checked. So we go have a chest x-ray on Thursday and see her on Friday of last week. X-ray is super! The decision is reflux (again) is causing the cough. So, through the weekend we experience more coughing and puking even after being on prevacid and sucralfate. Then on Monday night, more puking. This morning more still. This time it is a lovely shade of yellow and he has a fever. And he has had some loose stools. So...off to the peds. Ear infection is the verdict today - along with what ever is causing this cough. More antibiotics. Hopefully this one won't turn into pneumonia like the last ear infection he had.

New Diet...

Another piece of this puzzle is the new diet Mr. Miles is on. Low fat, low to no sugar, only whole grains, no butter or margarine for that matter, only skim milk, way more vegetables and something else I am forgetting. Anyway...my pop tart, waffle and bread loving son is not a fan. It has not been that bumpy but he would still prefer to just eat bread covered in syrup. "Mo Wa-Wa now" (that is - more waffles now). What prompted the diet was me. I asked why nothing works. What I mean is this...without his erythromiacin and miralax there is only puking. There is no digesting and no pooping without these meds. That is all well and good that the meds work but what is wrong that it just doesn't work?? Plus, the miralax only works part of the time. They say you cannot build up a tolerance to it but he has it everyday but it only works maybe 4 out of the 7 days in the week (this week excluded of course). And he still pukes even with the erythromiacin. And what he pukes usually isn't digested or even broken down...sometimes like he swallowed it whole. *TMI, sorry* So we are seeking a 2nd opinion. Just because these issues don't seem to be getting better, in fact they seem to be getting worse. I don't think just giving him meds is the way to go. How about we figure out what is causing this and try to fix it?? (pardon my sarcasm).

*All kidding aside* I have lost 20 pounds!!! Yes, that is what I said - 20!!!! Okay, so I have done it with the aid of drugs (phentermine) but so - I look good :) Plus, a little amphetamine never hurt anybody. Okay, well anybody I know...except all those drug addicts that I would see when I worked for the probation department. Okay, well anybody I know personally, that is better :)

On the Horizon for Mr. Miles....

Oct 30 ENT....Nov 3 MRI (2nd try) and follow up with pediatrician...Dec 4 GI (2nd opinion). There is an almost whole month without any scheduled appointments!!!

Hope you all have an uneventful week! :) Oh yeah, say extra prayers for my sister (Hi Kat!) her husband just left for Iraq and she is in Alaska with her three (wonderful) kiddos. So very far from home and family (both her and her husband).

"Please sign and mail your return on or before October 16, 2006"

2006-10-15T22:25:00.000-05:00

I have heard the cries and so I am here. Things have been well here at the Suggs' house.

I have worked my tail off lately!! Anybody file an extension on their taxes in April? Well, you are the reason I have had to work so hard this past week!! I worked at least 10 - 12 hours a day! Holy crap, were we busy and we still have tomorrow to go. But I like the time and a half for overtime so no real complaining here :)

While I was super busy, Sean was in San Diego on business (lucky!). He went to become certified in some computer program or two. He could walk to the beach on his lunch break!!
Plus, my parents spent the last week in the Bahamas!! I think it might be my turn for a vacation :) Anybody got any ideas???

I am watching a movie and trying to type this...better pick one...gotta go...

Watching "The Station Agent" btw...

"Doh Hop!"

2006-09-07T19:34:00.000-05:00

This is a very special post just for Aunt Christy!!!

Sean's whole family went to TCU (Go Frogs!). His mom, his dad, his sister (Christy), his uncles Bobby and Collins, his cousins....and so on. Very purple family! Although Sean went to the Art Institute, we root for the Horned Frogs too. I think we would be exiled from the family if we didn't!

One of the first things that both of my children have now learned to say is "Go Frogs!" Riley would say it and even do the hand 'frog' thing, and now Miles just said it on Sunday. TCU was playing football and Sean said "Go Frogs!" so in turn on his own Miles said, "Doh Hop!" We had to call Aunt Christy and tell her right away! Now he says it everyday.

We love you Aunt Christy! :)

Uneventful Weekend

2006-09-05T23:01:00.000-05:00

Sometimes you just have to say...nothing is going on here. We have had a great weekend! Saturday we laid around the house until lunch time, then we packed up our swimming gear and went to a friends house to swim and eat dinner. Ms. Thuy made mac & cheese with tater tots for the kiddos, jello for dessert & she made pasta with Shrimp and pesto sauce for the grown ups. We had a great time and we just fell in love with their beautiful new home and community. Thanks Phi & Thuy for having us over :)

Sunday, we were a little late for church. Well, not late for the service but late for the congregational meeting before the service. See, Sean and I are deacons at out church, First Colony Christian Church in Sugar Land, TX. Since the congregation was to vote on our new budget, we should have been there on time (oops!). Anyway, budget didn't pass so there will be another meeting on Monday. On to the rest of the day...My friend Jan (Hi Jan!) called and said she was babysitting a beautiful little girl named Emma and wanted to come play. So we went to Memorial park and threw a football (Emma wasn't very good at throwing the football, she is 1 yr old...but she helped me see how big Miles is) and put the kids in the swings. I just love to get outside and get some exercise!!! That was fun. Every time Miles got the ball he would just chunk it behind him. You'd say, Miles throw me the ball! He'd say, No and throw it the other way! Silly kid!!!

Monday started off with us laying around in our jammies!!! (awesome) Then while Sean fired up the grill for his famous hamburgers, me and the kids went in the backyard to kick the soccer ball around. Miles did the same thing this day. "Miles, kick the ball to Mommy." "No." Then he would pick the ball up, run half way across the yard and throw the ball into the bouginvia, which is very thorny. Silly kid, but it was fun to chase the kids everywhere. So we had a good lazy lunch. In the evening we went to the park again, this time to wear the kids out :) We threw the frisbee and football. Then climbed on the playground until everyone was exhausted. We had loads of fun and I couldn't have asked for a better weekend with my boys! I am feeling very blessed these days!

btw...Riley had a fever tonight, 101.4, plus his tummy hurt and he had a headache. I hope he feels better tomorrow! We have got to get the sickness out of our house!!! It feels like these boys are just sick all the time! Miles woke up this morning with a barky cough! Tonight it sounds better but each cough has been followed up by a sneeze. And would you believe that the Cardiologist STILL has not called me back from the blue legs!!!! (I am a little ticked, he is really cute and all but not so cute that I won't find a new one! Well, he is really cute...I could let this one thing slide...)

Cool kid...

2006-08-29T18:03:00.000-05:00

I had to add a picture.

The Meyer Center for Developmental Pediatrics

2006-08-29T17:24:00.000-05:00

Today Miles had his evaluation from the Meyer Center for Developmental Pediatrics at Texas Children's Hospital. We were late, about 20 minutes, but we got right in. We were on the waiting list for about 1 yr for the evaluation. I was so terrified that we would get there and they would say they couldn't see us because we were late. We saw Dr. Madduri (she isn't on the TCH website). We liked her, Miles liked her too. She said that Miles is at an 18 month level for his speech. She suggested that we get him tested by the public schools closer to his 3rd birthday to start services there. He is on level for just about everything else. She said absolutely no to Autism (we knew that) and that he may have issues later on with reading, reading comprehension, and essay writing. She also recommended that Miles have an MRI to make sure he doesn't have any damage from low/lack of oxygen from birth, or from when his shunt narrowed, or when he had his...whatever it was, when he stopped breathing and turned blue and needed rescue breaths but they swear it wasn't a tet spell...from that. I would like to see what the spot on the back of his head looks like where he had the pressure sore after his 2nd surgery.

Anyway...He did go to the ER on friday of last week. He is okay. That night he had a low fever, 99.5...then in no time it was 102.5. Dr. T says that 102.2 is the magic number. Plus, his heart rate went up, he was increasingly lethargic and not responding well. This happened in a matter of minutes. It really freaked us out, hence the ER. We got there at 9pm. He puked all over the lobby. We were seen in triage at 9:30 and then waited until 12:39 for a room, yes 12:39. When we got in the room, his temp was 102 still, they gave him more tylenol. His pulse ox goes down when he has a fever...does anyone elses kid do this? He is normally 97%-ish but when he had a fever it was 93-94%?? Anyway, his pulse ox stayed pretty steady, his heart rate was up a little bit. Normal for him is about 130-135 but when we got there it was 157. Still, the docs didn't seem concerned, hence the 4 hour wait. Although, I should say that we got in before a kid that came in on an ambulance. He had a seizure and was not breathing when EMS got there, but by the time he got to the ER he was fine...well not FINE, but you know what I mean. When we were #1 on the list, they were #12. I felt a little bad. Anyway, they checked his urine (because of the recent not going for 17 hrs and saying 'ow' when he pees), it was fine. They did a blood count and his white count was low--virus. I cannot tell you how much I hate to hear, "We think it is a virus." Because the next thing is, "Just watch him, if he gets worse, come back." No treatment, no nothing to make him feel better. But, he is over it now, I think. He has had no fever since Saturday. His sleeping is a little off. He has been waking up at 4:30 screaming and pointing to his chest (like he is pointing at himself, not his heart) and saying 'no mama.' He was doing this before the ER so it isn't just me, I think he says 'no dada' to Sean. If not, maybe it is just me :). btw...we were in the ER until 7:30am Saturday. Sean let me sleep in until noon (he is a good man!).

I have enjoyed my days off although three of them were spent at Texas Children's Hospital. Thursday, speech therapy, Friday/Saturday, ER, and today Tuesday, Meyer Center.

So next is Sept.7, Gastric Emptying Scan and on Oct 3, MRI (he has to be sedated for that one--regular sedation no CV anesthesia--woohoo). I plan to update before then, but we may not be that exciting for a while (thank God!)

btw...Riley's open house at school is tonight. He is doing a great job in Preschool! He is sad when we pick him up because he likes to stay and play :) He goes to Our Saviour Lutheran School

I hope everyone is having a very uneventful week :) ~Becky

My conundrum of a boy...

2006-08-25T10:43:00.000-05:00

This is an old picture, but cute.

Miles and Riley were making Labor Day cards for their grandparents. Ya know, cause Hallmark hasn't come up with cards for this holiday, so we had to make own! They were finger painting and making a royal mess! Miles had his hand covered with red, yellow, blue, purple, green and brown, he looks at me with this oh so cute face and says "Boop!" I was very cute!

So in speech therapy today, Miles was to work on finishing words. He will say 'out' but it is 'ou' and he will say ball but it is 'ba.' Man, he did not like actually working instead of playing (and learning at the same time). He threw himself down on the floor and had a little fit. He eventually came around, after she put the matching (finishing the word) game away. He did try to say bounce, roll...a few others that are escaping me right now.

Anyway...more testing on the horizon for Mr. Miles. He up-chucks all the time. Well, he is a fine balance of erythromiacin and miralax so that he a. won't puke when he poops and b. will digest his food. The other day he had a snack at 3, took his erythromiacin at 5 and 'gave me' his 3 o'clock snack at 7:30 and again at 8:15. So...either the medicine isn't working or he isn't digesting his food. What he 'gave me' looked just like he had taken it off of his plate. It certainly didn't look like it had been sitting in acid in his stomach for the last 4 1/2 hours. His gastro, Dr. Krishna, suggested that Miles have a gastric empyting scan. So this has been scheduled for Sept 7 @ 9am. This will be lots of fun (I can't get it to stop underlining!) the test is in the nuclear medicine department at TX children's. It will take an hour and a half. He has to be strapped to a table for the whole deal while they take pictures of his food digesting. This is after he eats eggs, oatmeal or milk with the nuclear meds in it. I cannot imagine that this will be fun. We did this before when he was about 6 wks old. We found that he had pyloric stenosis and spasms of his pyloris. The next thing, if we aren't happy with the results of this GE scan, is an endoscopy. That is more sedation, more intubation, more tubes, more low pulse ox and more convincing nurses that his pulse ox really is okay - for him. I also may have to call his urologist...he held it the other day for 17 hours! Checked with the doc (not the normal doc, she is out on maternity leave---congrats Dr. T), she didn't seem concerned because he still had tears and sweat. Today, he keeps pointing to his pants and saying "ow." Then peed...alot...like through his pants, he hasn't done that in a while. Could we be having our first UTI? He has 'outgrown' his urinary reflux.

But as I sit here in my chair while he is trying to spin me in circles, saying "doh ma, doh woun" I am filled with such happiness just being his mommy :)

Sorry for all the technical words this time :) Oh, the other thing he did while he didn't pee for 17 hours, besides vomit 6 times and the last time was green, his legs turned a purpleish/blueish color while I was holding him. His head was on my shoulder, my hand on his back and bottom. The cardiologist hasn't called back yet, the pediatrician thought I should check with him. While the legs were colorful, his pulse ox was normal. It happened twice. When I set him down in the sitting position, they went back to pink. He must be wired funny because I would have thought it would have been the other way around. Again, the doc (not the normal doc) wasn't concerned...well, I can't go that far. She said she has no idea what could be wrong. She said check with his cardiologist, Dr. Justino and his gastro, Dr. Krishna. So, that is what I did.

btw...I am on a mini vacation! Until the 30th I am off work! Just me and Miles during the day and I get extra special time with both of my boys!

2 yr Reflection...

2006-08-09T22:37:00.000-05:00

I am a few days late, but Sunday was the 2 year anniversary of Miles heart repair surgery. Here is a picture of Miles after all his chest tubes were out and he was extubated, he was 15 weeks old, two weeks after the surgery. The yellow blanket is his SAAM blanket. That stands for Security Against All Monsters :) A little boy named Brian made this. He saw his friend Sam in the hospital for something (I can't remember what for) and he was scared for him so he made him a SAAM blanket. Then he decided to make them for all kids so that they won't be scared. My friend from home, Louisville KY, got it for Miles. (Thanks James :) The other blanket was made by the volunteers at the hospital, it actual has fortune cookies on it, the nurse said it was the only thing that was not girly. If it is not flowers, we will take it. Anyway...on to reflecting over the last two years...

Of course, you can't come upon a date like this and not think about all that got you here. July 26th '04, I took Miles to the pediatrician and said, "I don't know what it is, but there is something wrong with my son, I can feel it. He isn't himself, he is crying alot and I think he looks more blue." He (who by the way, is no longer our pediatrician) says, "He is fine, he just has colic." And sends us home, he never even checked his pulse ox and I must have had my head in the clouds because I went without asking for one. But, when I got home I called the cardiac center and left a msg for our cardiologist and he told us to come in. He looked at Miles and told us we weren't going anywhere. He, Miles, had a cath and we found out that his BT shunt had narrowed. It lasted 10 weeks. We were really looking forward to getting the year out of it that they said we would. Anyway...most of this is on Miles page on Tchin. After his surgery is when the real fun started!!! We got a new pediatrician, do you blame me? Dr. Tiwari is awesome, she takes good care of us.

Shortly after Miles recovery he started PT. He didn't want to move, let alone walk :) He walked at 17 months, while we were stranded during the 'evacuation' for Hurricane Rita at the Woodlands Christian Church. They were really good to us. He started talking...well...after a year of speech therapy...The words are coming out now like water or Wa as Miles would say. Today he said 'Done' and 'Ta-Da!' He actually said 'Hi' to our Jenna on the phone today. Today is her 10th birthday (that is another post coming soon). My littlest man is the coolest 2yr old ever, I'm pretty sure.

Anyway, I am so happy to have him here with us today. I just love my guys so much. I tell them everyday (well almost everyday), "I am really glad to be your mommy, I am glad God gave you to me to take care of and to love." Riley says, "I know mom, you say that everyday."
And I will keep saying it, and saying it....

~a very happy mommy~Becky

Keeping it Interesting....

2006-08-01T20:40:00.000-05:00

He looks like that guy from Star Wars...
Can't remember what character...

[dad edit: they are called tusken raiders
thank you very much]

This is shrimp finger boy...gross but funny!

It's just fillings...

2006-08-01T13:31:00.000-05:00

Miles had his day surgery today to get his fillings. He got 5 fillings in 4 teeth. He did well. We had CV anesthesia, Dr. Campos, he was great. We got there at about 7 am. They took him back to get his vitals and talk to the NP and we played for a while then took him to surgery at right about 9 am. The whole thing took about 45 minutes but we left to go home at about Noon. He took a while to wake up and then to convince us that his pulse ox was okay. It wanted to stay around 93% but when we got there intially it was at 97-98%. When we left it had been 95% for a few seconds. Anyway, he is asleep, where I will be momentarily. We will just watch him closely today and he should be back to normal by tomorrow.

When we walked down that hallway in day surgery where you hand them over, like we have done so many times now, I cried a little. Miles gripped Dr. Campos, started to cry and covered his eyes. My husband and I both got a little choked up. Then said, Why does everything have to be so tramatic? It's just fillings! But such is life with a CHD kid :) I wouldn't trade him for anything!

Off to nap time! ~Becky

Dishwashers Rock!!!

2006-07-30T01:54:00.000-05:00

I want to tell the short version of the back story without confusing anyone...So, here goes. I used to work as an investigator for the local Probation Department. It was a very cool job, but didn't pay well. I left there and went to work for Administaff. (I will put their name so that you know the company that doesn't value people!!!) Shortly after I started there I found out I was pregnant with Miles. I say shortly, but it was really after the first interview and before the second. I tried to hide it for a while but this being my 5th pregnancy, I showed pretty quickly. I told my boss after I had been there for about a month. About 1 week after this, I was put on probation (ironic huh, leave probation only to be put on probation) for my sales being low (I was a telemarketer...hey it paid well). I tried everything to get my sales up...everything! The quota was 3/day and I was at something like 2.5/day. They kept me on probation alot longer than they should and then fired me when I was about 5.5 months along (bastards!), just after Christmas. The guy who did it (it was his first time) gave a $100 American Express gift check because he felt so bad.

Anyway, so here I am unemployed and pregnant with a mortgage. Of course my husband was working his butt off and I was getting unemployment. But it wasn't enough. We put our house on the market. It sat there FOREVER and didn't sell. The only offer we got was for us to finance 50% for well under our asking price. We lost our house in December 2004 after Miles was born. (as I am sure you can understand, our focus totally changed once he arrived) We moved out of it just before he was born though. I couldn't see moving after we had the baby so we found an apartment that looked like it was the "perfect" size (when it was empty). Once we got all of our stuff in there...MAN was that place small! Plus, half of our stuff was in storage. BUT, it was really cheap and allowed us to recover and allowed me to stay home with Miles and Riley so no daycare costs. It also allowed me to be free to take Miles to a million doctor visits and to stay with him while in the hospital for the 10 weeks he was in the first year.

Moving right along...We were so sick of that tiny place by the end of our lease. Plus, I had gone back to work so we had more money (back at the probation department...this time as a secretary). So, we found a house to rent. COOL! A yard, a garage...all the good stuff. BUT NO DISHWASHER!!! That is cool, I can handle it, I will just wash them myself! Well I was the youngest of three...I was the "put away" girl! Chris was wash, Katie was dry, and I was put away. I never had to wash dishes! Plus, by the time that I was the one who would be washing, my parents bought a dishwasher. I hate to wash dishes and usually look at the sink full and say, "I will get it tomorrow." But you can't do that because tomorrow, there will be more! and tomorrow and tomorrow....

Well, while my parents were in town my mom and I made a run to the grocery store. We passed a yard sale and I thought I saw a dishwasher for sale. It is not my house, I can't install appliances so why stop right? My mom says, just stop and ask about it. I say, nah, I don't feel like negotiating a price. She says, I'll do it, what is your limit? (I am really cheap) I say, "$15" She says, okay. We stop, I only have a $20 so my limit changes to $20. Would you believe it is a portable dishwasher! You roll it up to your sink and hook it to the spicket!!!! My mom the negotiator says, will you take $15. The lady says, I will take $20!!! (kismet!) So after a year of washing my dishes myself, I am now the proud owner a fine used portable dishwasher!!! Best 20 bucks I ever spent! Now all I have to find is a removable garbage disposal!

The Family was in Town

2006-07-23T13:21:00.000-05:00

So, here is me and my folks. They were in town this week for a visit. We had lots of fun and the kids love their granny and papa. It was a little hot to do things outside but I think everyone had a good time anyway. This was outside of Denny's this morning.

Miles bears a striking resemblance to my dad. We have been calling him (Miles) his mini-clone.

The story of miles - part 1

2006-07-17T19:34:00.000-05:00

becky has placed a great article on the tChin website with a brief history of miles to date
http://tchin.org/portraits/miles-2.htm

i promise we buy them paper!

2006-07-08T00:34:00.000-05:00

Cheeto Fingers

2006-07-06T21:54:00.000-05:00

Just a warning...this is going to be a little gross...

2006-07-06T13:02:00.000-05:00

I went to the ENT today. They said that they needed to do a little procedure to drain my sinuses. I asked the nurse ahead of time if it would hurt, do I need someone to drive me, can I go back to work??? She assured me that it was "No Big Deal, they just spray some stuff in your nose, that's all." Well let me tell you that it was a big deal, and they don't just spray stuff in your nose! First he sprayed what smelled like Nickelodeon Gak in my nose. Then he put a needle into each nostril and gave me a shot of some numbing meds, that stung! Then the took a pokey thing, um...a drill maybe...or a screwdriver...and stuck that in my nose. He then started to twist it into my sinus!! I said, "Wow, this is more than I expected!" (ya think!) When he broke through into my sinus cavity it was like when you just break through the drywall in the living room, the poking thing slid through into a hollow area (my brain, I can only assume). Then, yes there is more, he attached a syringe to it and pushed fluid into my sinus and it drained out into a bowl I was holding. Aren't I painting a lovely picture? He did the same to the other side. However, when he started that side, the numbing meds had worn off so I had to get another shot. THEN I had to get a shot of steroids in each hip. Got a new prescription for a nose spray (like I want anything else in there) and have to continue on my antibiotic and sinus flush at home.

Not only was that a big deal to me, but my face hurts! It feels like I had major dental work done...my jaw feels tight and my teeth hurt. Plus I have a headache. I have to follow up next week to make sure we don't have to do it again!!! Again! Are you kidding me? He did say that if it isn't gone then a CT scan would be next.

On to a lighter note...I hope everyone had a happy 4th. Ours was pretty simple. Sean BBQ'd some brisket that was fabulous and we spent a great day at home. Sean & Riley went to see fireworks while Miles and I stayed home to avoid the crowds and mosquitoes. Miles and I played Hullabaloo which was really fun since he doesn't know his shapes or colors. He just stood where ever he wanted. He did do the silly walks like when it says "Fly to...a yellow" He would flap his little arms. OR "Spin to...a square" He would spin around right where he was. I have to say that was much better than any fireworks show. I just love the special time with my boys! They love their Daddy so much (and why wouldn't they) and want to play with him more than they want to play with me. But when I finally talk them into playing with me we have so much fun!

Talk to you next time!

Becky

2006-07-04T22:38:00.000-05:00

Hello Family! We created this blog as a fun way to keep you informed about our kids and family. So the latest update is this...

Riley is great, has a Pre-K field trip tomorrow to pump it up. Miles is doing very well. He has a speech re-evaluation on Thursday. Sean...great. He is an awesome dad :) And a level 32... Me...just fine. I am still getting over sinusitis...my sinuses are swollen shut (yuck). The 5 medicines that I am on are sort of working. I go on thursday to see if they need to surgically drain them. We are going on 5 weeks of this. Jake (the cat), as crazy as ever. He hasn't bitten me lately, in fact he has been the exact oposite. Very loving...he is plotting something I know it!

My Dad is doing well, (right Dad!?). He follows up at the doc tomorrow.

I am glad that our lives are not that eventful right now. As you all know, it can get pretty hectic here at the Suggs house!! Hopefully not for a long time.

Love to all,

Becky

2006-07-04T15:12:00.000-05:00

hungry hungry hippo!

2006-07-04T14:59:00.000-05:00

Coolest cowboy ever. Storytime in the suggs house!

2006-07-04T14:50:00.000-05:00