Today someone on a facebook page I belong to asked what’s the most wonderful thing or something to that effect.
For me it has been seeing Adrian full of joy!!! Our child has been in and out of doctors appointments since before he was born.
When I was Eight months pregnant we found out that our baby would be born with Renal Disease. From then on we had ultra sounds once a twice a month and a scheduled delivery date.
Once he was born there were several doctors appointments. For the first month we went to weekly ultrasound appointments. Then bi-weekly ultrasound appointments for six months and then every three months till the age of five. Now he goes once a year. He has had several iodine tests to check for kidney reflux and to make sure his hydronephrosis was not progressing. For a while there we thought he might need surgery to fix his ureter. We had to keep him on Amoxicillin to prevent UTI’s.
His father and I were a wreck through all of it. Adrian was so little but we could tell he was uncomfortable. He would cry and looked upset.
We also found out he had a condition called G.E.R.D. and severe sinus allergies. For these he is on Prevacid and Zyrtec.
Adrian has been diagnosed as failure to thrive and enrolled in Early On a state funded program for learning delays. My son did not start walking until 24 months, and spoke for the first first time at around 3 1/2. He did not master pointing until almost five.
Next we found out that Adrian and I both have duplications of DNA strand 7q and 12q. Genetic testing was a requirement of autism diagnosing.
Next we found out that he has PDD-NOS and mood disorder. He does not currently take anything for these conditions.
Then we found out about ADHD and he started taking Metadate cd. Which has worked wonders for him!!!
Then five months after his sixth birthday he started having seizures. We were not surprised because both my husband and our daughter have seizure conditions and our daughters started two months after her sixth birthday. More doctors visits to the neurologist this time EEG’s, sedated cat scans and MRI’s to find out he has the exact condition Jade (our daughter) does Begnin Rolandic Epilepsy. This causes complex partial seizures. Adrian must go in for an overnight EEG every three months. With neurologist visits every six months. For this he has to wear a helmet the entire time and be strapped down for part of the time. This makes my husband extremely mad!!! I find it is needed to complete the test. It makes me more sad than angry. He is now on Keppra and Valium to control seizures. During one of our last visits they found that his hippocampus is enlarged and he has spikes throughout the night.
He also has high anxiety and for this we tried Zoloft which he is allergic to and straterra which he is also is allergic to and which I believe caused several tonic clonic seizures that landed him in the hospital. He had never had that type of seizure before and no one could tell me why all of a sudden after giving him straterra he had four of them. Coincidence I think not!!! So his teacher calls me about his finger picking and asks what I can do about it. My husband and I have decided no more drugs after the last incident so I ask our pediatrician. He says Valium is a anti anxiety drug that should work just fine. Then I hear from his other teacher a week later that he has not been picking that week at all. Okay he’s been on Valium a month so it is starting to work. I won’t even breathe a word of his cycling moods again because discussing that is like talking to a brick wall. He has had cycling moods his entire life where he is extreme about something for three months or so and then leaves it for awhile and then picks it back up again. We go through this all the time.
Even with all this going on our little guy is resilient. He laughs and smiles and plays our wii. His favorite game is wii sports bowling, his favorite color is green. If you ask him about Thomas and friends he can tell you every character name, color, number, and job description. Oh and shape. He loves bugs, but also thinks there gross. Once I caught him trying to let all the June bugs out of another little boys bug box. He is fascinated by water. Loves being with his dad finally! That’s a story for another post. And every day when his sister gets home from school he lights up like a Christmas tree and runs to hug her and tell her how much he missed her and loves her. This last one is a recent development that I have waited for. Just yesterday he said for the first time Jade come play with me. I wanted to cry!!! Yes our kids may have a lot of difficulties but that just makes every triumph they have that much sweeter!!!! There is always hope and our family’s never ending motto We Never Give Up!!!