To start with Jacob had his one year check up with his new pediatrician. When we first arrived at the visit the receptionist handed Shawn a 1-year developmental questionnaire for us to fill out. Wow, was that an eye opener to see how far behind Jacob really is. On a daily basis with Jacob you just become accustomed to who he is and you almost forget about what a typical child can do at his age. On the whole survey I do not think he fit the criteria for one item. Every column was checked with a big fat "NO". When it came time to get called back and meet with the pediatrician, the first thing he did was take the questionnaire and threw it in the garbage. He stated that the receptionists do not always know the background of the kids and therefore just give them to everyone. He said we never have to fill those out and it is only just a kick in the gut to families with special needs children. I am glad he is on the same page as us. The pediatrician then overviewed Jacob's growth. He is 90th percentile for length (he is getting to be a very long and lean kiddo), 30th percentile for weight, and 5th percentile for head circumference (we are glad to see he is staying on the charts). Beyond that he switched Jacob over to a toddler formula and addressed any other concerns we had. To end the appointment Jacob received 4 vaccinations. Poor little guy!
The next appointment was with the neurologist. We spoke to him about our concern for Jacob's increased spasticity. It seems with each passing week that Jacob is having higher tone with his muscles and is arching his body back more. Now that he is getting bigger, he is getting harder to hold. It becomes a challenge when he is continually arching out of your arms. Let's just say he has become a good upper body work out for us. Jacob also seems more uncomfortable during his sleep. He gets up multiple times and cries for longer periods of time during naps and at night. The neurologist felt after hearing our concerns and from his observations during the visit that another dose of Botox would greatly benefit Jacob. He also increased some of his medications in the mean time in hopes of providing Jacob with some relief. There was really no other news that came from that appointment so we will meet with him in three months as long as we steer clear of the seizures.
Over the past month we have had several visits from the hospice nurse. She still comes every other week to do a home visit and check up on Jacob. Each time she has come, Jacob has checked out well. So no news is good news with her! We have also had several visits with the occupational therapist. She has started to work with Jacob on oral recognition. Currently, Jacob still does not take any solids and is strictly bottle fed. The therapist is working on different techniques in hopes of stimulating the mouth to accept and allow food in. At this point Jacob still does not seem to understand the concept of moving the food in his mouth to allow him to swallow it. When anything is introduced in to his mouth he does not move his tongue and the food just sits there. This task may take a lot of time to master or he may never grasp the concept at all. The best we can do is try with it, so that is what we are doing. The next thing the therapist is working on is positioning Jacob in a stander. A stander basically looks like a torture device from the outside (you'll see in the picture below), but actually enables Jacob to be able to stand upright on his own with no assistance from us. Allowing Jacob to stand for small periods of time is good for his overall health. When they put him in the stander for the first time it was amazing to see how tall he looked and how old he looked. For once he didn't look like a baby, but a toddler.
We also had Jacob's annual IFSP meeting. Again, the IFSP is like an IEP for babies. It allows Jacob to receive services through the county for his disabilities, which includes the therapy. Since we met only three months ago to tweak his plan, it was a rather quick and painless meeting. All of his goals stayed the same. This included working with Jacob on making better eye contact, being able to bat at and grasp toys, and adjusting him to new equipment. We spoke to the team about schooling for Jacob and when it will begin. We were informed that toddlers will begin preschool at the age of 3 and at that point they will convert over to an IEP. Once they are 3 they will attend preschool from 9-1:00 during the school year. It is crazy to think that is only 2 years away!
The last meeting we had was with a home health care nurse who came to assess Jacob's need for an in-home nurse to care for him in our absence. With Jacob's medical needs, he is not able to go to a typical daycare or have any provider care for him. He needs a person that has a medical background who can administer his medications and continually assess him on a daily basis. Although the meeting seemed encouraging and the nurse felt Jacob has a definite need for an in-home nurse, this normally does not happen right away. There is a long waiting list of kids who need in-home providers so Jacob's request will most likely get denied. From here we will then need to appeal it, reapply, appeal it, reapply, appeal it... you get my point. So, although there is a need, it does not mean that Jacob will receive this service any time soon. And until Jacob receives an in-home nurse, I will not be able to return to work. So for now, we wait to see what the outcome will be.
Aside from the appointments and therapies, Jacob has been on a bit of a rollercoaster lately with his overall health. He has his good days and his bad days. One day he will be doing well and responding great, and then the next he will be lethargic, breathing harder, and spiking a temperature. Although Jacob's condition has become somewhat of a normal lifestyle for us, it still is very physically and emotionally draining dealing with everything day in and day out. On the bright side, it is finally summer time and I have enjoyed getting some sunshine and fresh air after this long winter. We look forward to spending a lot of time outdoors and adventuring to new places as a family.
Relaxing During Therapy
Standing like a big boy
Say Cheese
