Sunday, May 13, 2012

Im Still Here...

Hi all.

Yes, we are all still here and doing well. I do feel bad about not posting since being in Ukraine. A quick update:
We arrived home with Peter January 12th, 2012. Peter weighed 25lbs when we got home. Last week he weighed in at 28lbs10oz and 39" long.
He has been to see almost all the specialist at Texas Children's Hospital since we have arrived home and is in remarkable health. We see Genetics this week for a chromosome work up. We will need 'proof' that he has Down syndrome for certain insurance coverage and some day for Medicare/caid...whichever it is...I forget.
As of now Peter passed his hearing test and does not need tubes. His tubes are normal size and so are his tonsils and adenoids.
Peter does not need glasses and sees fine. He does have nystagmus that he will eventually grow out of.
He does have hypothyroid and is on Synthroid every day for that. The endo Dr is having us get some bloodwork done to monitor his levels. She also is sending us for an MRI. A fact I did not know is that Nystagmus can be the result of a problem with the pituitary gland, so she wants a look at that to make sure. Im so glad the Docs here are thorough!

He will need surgery from Urology to bring down both of his 'floating' testicles...yes, you read that right...floating. The urologist could not locate either one at the time of his exam, but assured us they were there because otherwise he would not have a penis :) He also has a thin bar of skin over his urethra that will cause his urine stream to split sideways. He said that will be fun for about 2 days once he is potty trained and peeing all over my floor. So they will snip that and also have him circumsized.

He has had his PT and OT eval, I still need to schedule the SLP eval. Ive received his PT eval back and they put him at 10-18 months, which is far better than I thought he would be! And there is a PT that 'wants' him, meaning she has requested to be his therapist. She is also a therapist the Rise school where Kai attends. Peter is a bit of a celebrity at Rise and at our Pedi office...everyone wants to meet and see the little man everywhere we go. But this PT watched his OT eval and was just enamored with him, so I will be calling this week to start scheduling him. Thankfully I work at TCH and we dont have to pay the $45 copay for therapy sessions, otherwise Id be in the poor house between the two boys. But it also means that Peter can have as many sessions as needed without hurting our pocketbook and he gets the maximum amount of therapy so we can get him up to speed! We will be ordering his orthotics soon and Im sure he will be walking in no time. He definately has the want. He stands up hanging onto any and everything, including our legs, the staircase(which he has ripped a post off of already, lol), the counters, the stove, the dining room table...he is everywhere!

All of his vaccine titres came back up to date. He also tested positive to antibodies for Hep C. That was quite a scare. There is no vaccine for Hep C and it is the one that causes liver damage that can lead to then need of a liver transplant. We figure he was exposed either during his NICU stay or when he had his heart surgery. We had further testing done and he tested NEGative for having the chronic form of Hep C! Which is a tiny miracle within itself. Only 11% of people who have acute Hep C do not contract the chronic form of the infection. Someone is looking out for our little man.

And lastly, his heart. We were very worried about his heart. Before going to Ukraine, we were told that Peter was very very ill due to his heart defects. Obviously this is not what we found in the Baby House in Odesa...I knew just by looking at him he did not have some huge heart defect or even the high degree of pulmonary hypertension. He probably did at one time, but he was on the proper medications for it. Kai, and now Peter's, cardiologist got him in to have an echo within a month of us being home. Dr Lopez is a phenomenal cardiologist and really cares about my boys. She worked us into an echo and clinic visit when I was told she had nothing available until May. Peter does still have some Pulmonary Hypertension, but it is not severe enough to require any medication to treat it and is hopefully self resolving. Peter's PDA and VSD were both properly and completely repaired in the Ukraine(thank you very much for Peter being in a Baby House that cared enough to have this done)...but he does have a cleft in his mitral valve(valve between his left atria and ventrical)that will have to be repaired, requiring another Open Heart surgery. I was hoping for a repair in the cath lab, but it has to be done on the table.  Most of the time the valve itself can be repaired and doesnt require being replaced, we will hope for that...because a replaced valve will call for further surgeries down the road for further replacements as he grows.

All in all, that is the 'worst' news on his health. But he is not clinically showing signs requiring us to fix his heart yet. Dr L would rather we have him home with us for a while to bond and gain weight and get healthy before putting him on that table. I have no doubt the surgeons here will do a great job. They fixed Kai's tiny heart at 10 weeks old, so I am sure Peter will be a breeze.

We still have Genetics(this week), the Down syndrome Clinic(not til December, seriously...), a neuro consult for an EEG to rule out Epilepsy(the orphanage claimed he had that and that is why they gave him phenobarb, which he has not been on since he has been at home), and the dentist. And that is it for the first round of specialist.

So, there is my update. I will post pics when I am at a computer at home. I will also eventually update everyone on what happened IN Ukraine with the other little boy, Ty, that was supposed to come home with us...unfortunately it is not a happy story and we learned first hand about religion, government and corrupt men during our stay there. My heart still hurts for our little boy and I worry about him every day. I do not yet know the lesson to come from what happened...but it is there.

For now, that is it! Have a great night and Happy Mother's Day!

4 comments:

  1. Thank you for the update! I'm so glad that he's healthier than expected, and what a blessing for the PT to be covered like that. And he's not only a little celebrity where you live - he's got fans all over the place!

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  2. And I forgot to add that I had to Google that seizure medication...which can also be used as a sedative. How awful :(

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  3. Julie,

    Thank you for the update. We don't know each other but I think you and I were the only ones who ever contributed to Ty. He was born when my mom died so I felt a bond with him. He was one of two boys that I first started following on RR (and now I follow many, many!!!).

    Oh how I have worried about what the real story is and what has happened to him. When Patti R. said she would never stop praying for him my heart sank. I think of him often and whether he is safe or cared for or alternatively in an abusive or cold environment. I'm not sure if I'll be able to read your post about it. Honestly, I may not want to know.

    You don't have to post this publicly but I just wanted you to know there is someone else who is praying for Ty and he'll never leave my heart.

    Sue

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  4. Love that sweet boy! So glad he is doing well. This is his year of greatness!

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