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

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!!!!

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...

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...

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!!!