Grant has had quite a few appointments since my last post...Here are the updates on these appointments:
A state funded group called "Help Me Grow" came to our house to assess Grant and help him develop properly. Since 22Q tends to cause developmental, physical, and verbal disabilities, they come to your house and work with his fine motor skills and gross motor skills. If they feel that he is not meeting the criteria provided, then we may have to work with therapists that specialize in his specific disability(s). Currently, he is within the range of numbers that they give upon assessment. We made goals and then we will follow up in about 3 months to re-assess his progress.
February 28th - Two Month Well Check:
Grant went to see his pediatrician for his 2 month well check and immunizations. He had to have 3 shots and drink one of them too. YUCK! Poor lil' guy! He was not a happy boy :-(
His growth is still not meeting the curve, however, he is kind of making his own curve in the under 3rd percentile. She was impressed with his development...said he's right on track! Just concerned about his growth. He weighed 7 pounds 1.5 ounces and was 18 3/4" long. This puts him between 1 and 3 percentile. For those of you who are unaware of how these work, basically the average sized baby at each well check should typically be in the 50th %-ile. At his current age, 3 months, he should be approximately 10-15 pounds and he is only about 8 pounds now.
We contacted the genetics department to fill them in and see if they want to check his growth hormones. They will wait till he is at least 1 year old before doing so...if needed.
March 2nd - Cardiology Clinic at Children's:
Grant had a follow up with the Cardiologists at Children's Hospital to run an EKG and check the status on his current heart conditions. As a reminder, he has a VSD (ventricular septal defect - hole in his heart), and 2 other small issues. The EKG was normal and the VSD sounds like its closing up! They will want to do an ECHO in about 6 months to check on all the issues and make sure everything is functioning properly.
March 7th - Post-Op Surgery at Children's:
Grant had his post-op with the surgeon from his previous surgeries. The doctor said he's healing up very well and wants to check on the testicle (that is still viable and had been secured) in a year to ensure that it stays viable. We discussed getting the circumcision in the near future and how that procedure would be done. He said we have two options...We can put him under anesthesia again and have it done in less than 30 minutes. Or we can have them hold him down and and numb the area while he is awake. Since we are more than likely looking at doing this when he's 9-12 months old, we decided we are going to have the surgery done. It seems to cruel to do the other option. Also, since he will be going under anesthesia, we may have his sacral dimple repaired at that time. This would add 15 more minutes to the procedure. The reason we would have it done is because the doctor said that typically when children grow up with these, they tend to get cysts and boils in that area causing a lot of pain and discomfort. (Grant had an MRI on the spine when he was in NICU to verify that the sacral dimple was benign.)
We will consult in 3 months to further discuss these options.
March 13th - ENT Clinic at Children's:
Grant had a follow up with the ENT doctor to discuss his respiratory issues and choanal atresia. We decided it's best to have surgery in the near future to open the bone up and allow breathing in his left nostril. Since Grant is having surgery on the circumcision and sacral dimple, we decided that it would be best to combine these surgeries together in order to not have him go under anesthesia too many times. We will consult again around July or August to arrange the surgery to coincide with the other needed operations. He was weighed and measured...height was 20" long and weight was about 8
pounds (he had on clothes and a wet diaper so we are estimating...if this is accurate, he gained nearly a pound in two weeks!!! - YAY!)
March 16th - Eye Clinic at Children's:
Grant had an appointment to check his eyes...when he was in NICU they assumed he had CHARGE and that disorder has many issues involving the eyes. Since CHARGE was ruled out and his actual disorder is 22Q, they may have issues from time to time, so they decided to keep the appointment. Plus, preemies and preterm babies are supposed to be checked to make sure everything is okay in there. So, his eyes were checked and they noticed that the nerve was a little small on the left eye. She wants us back in a month to look again and then we will see if further tests need to be done.
That about sums it up for now! We have a GI appointment and his 4 month well check coming up in April. Otherwise, he is doing great and developing quite well!
Thank you again for all your prayers and support!
Lots of love,
The Loechler Family
