Tubes and Surgeries

Currently Josiah has NO TUBES!!! He is off of oxygen and we did a trial run for about a month without the NG tube. Although he did not loose weight without the feeding tube, he is not gaining adequate weight either. We have an appointment next week with the pediatrician where we will discuss what to do about weight gain. He needs to gain weight not only for overall development but also for surgeries. The bigger he is for surgeries the better he will respond to anesthesia.

We recently had an appointment to check up on the kidney Josiah had repaired. And it is working great!! The urologist said that it will continue to get even better as he grows. Currently Josiah's testes are undescended and he will have to get surgery to bring them down. Ideally this will happen between 6 to 12 months corrected age. This surgery is simple and he would go home the same day (praise God because staying at the hospital again is one of my biggest fears!). At the time of that surgery we will also have an MRI done on his lumbar spine because he may have a "tethered cord". We will try to kill two birds with one stone by getting the MRI while he is already sedated for his testes.

We are waiting on the testicular surgery because we want to have his heart surgery before. Currently his heart is still the same... not better but not worse. If his pulmonary valve stenosis is not causing problems then we will wait to repair it. Ideally this surgery would happen before he is a year also. Generally his heart condition should not hinder him from gaining weight (some other heart problems cause poor weight gain). We are trying to determine if his poor weight gain is possibly due to his heart. If it is then we will do heart surgery sooner (in a few months). First we want to rule out the cause being the trial run with out the tube (which most likely is the case).

We recently had his blood checked because he randomly was running a very low grade fever. Some children with Noonan Syndrome (NS) get Juvenile Myelomonocytic Leukemia (JMML). Unfortunately JMML is linked to the gene mutation that Josiah has (this does not mean he will get JMML... just means we need to be aware that he is at a slightly higher risk for it). So I was worried that the low fever he had was a possible symptom of JMML. I was very comforted to find out that his blood was fine!

Craig and I received the results from our blood tests for NS....... and neither of us have it. So Josiah's case is considered 'sporadic'. Of course we know that this was all perfectly planned out. "Oh yes, God shaped Josiah first inside, then out; He formed Josiah in my womb. We thank God! Body and soul, Josiah is marvelously made! We worship in adoration—what a creation! God knows him inside and out, He knows every bone Josiah's body; He knows exactly how Josiah was made, bit by bit, how he was sculpted from nothing into something. Like an open book, God watched him grow from conception to birth; all the stages of his life were spread out before God, the days of Josiah's life all prepared before he'd even lived one day." Doesn't sound 'sporadic' to me :).

Iylah is so precious to little Josiah. She is very concerned when he cries. She will put his pacifier in his mouth with one hand and gently pat his head with the other when he is upset. She nurses her dolls when I nurse Josiah. The other day she stuck the breast pumping tubes (without the actually breast shields connected) to her chest to pump! She's observing it all. We have accidentally taught her everything from CPR to breast pumping over these last months!

Thanks again for all the love and prayers for Josiah and our whole family! Pray that Josiah gains weight. Pray that God prepares us for what is to come with surgeries. One of my biggest fears is returning to the hospital (even if just for a short period). It was so hard on the whole family while Josiah was there. There were many nightly tears during those 2 1/2 months we spent there. I know that he was slow to recover from his kidney surgery so I am trying to be prepared for a slower than average recovery for these next possible surgeries.