Yesterday, Jordan and I headed to the Gerber Center at the Helen DeVos Children's Hospital for the evaluation she has every 6 months. I accidentally thought the appointment was on October 9th...but found out when we got there that it was November 9th...so my list of questions had grown even longer! These appointments are LONG - usually about 4 hours!! Jordan held up great through the whole thing and did well with all aspects of the evaluation.
First we were seen by the social worker and we discussed insurance, social security disability income, and overall family life.
Next we saw Melissa the LPN who updated her chart and checked her weight and height. Jordan weighed in at 21lbs 15oz and 31 7/8in in length.
The first team that came in was Jane the speech path and Cyndi the dietitian. Jane was quite pleased with Jordan's communication progress and encouraged me to work on more "b" words since she has quite a few and maybe even try some "p" words. She played with Jordan for quite a while and said that her imitation was good and that we should shoot for 1 new word a week. The dietitian was concerned that Jordan wasn't gaining weight quite as fast as they would like and that her length to weight ratio had dropped off from 25% to 10%. I explained that she would occasionally miss her late-night feeding because it would get too late and I would go to bed. Cyndi felt that Jordan has become quite a bit more active since we last calculated her caloric intake and that since she was now walking (running) around all day, we needed to increase her calories. We now have a new mixture of Pediasure and Boost to use and we increased her feedings to 160 ml/feeding with a total of 1005 calories per day. She also wants me to change her feeding schedule so that Jordan eats every 3 hours - this requires me to adjust her nap so that her feedings take priority over her natural sleep schedule - so now instead of taking her nap around 1, I have to keep her awake for a 2pm feeding and then put her down around 2:30. This is going to take some adjustments on my part as well as hers!! She also wants me to take Jordan into the peds office for a weight/height check every 2 months so we can monitor her growth. The goal is to keep her between 25-50%.
The next team to come in was Beth the physical therapist and Nora the occupational therapist. Beth felt that Jordan was doing well and that since she was so active, she would continue to develop her gross motor skills. Nora thought that Jordan's thumb splints did help to stabilize her thumbs quite well but that the right one needed to be re-fit because it was creating pressure points. She also thought that Jordan could benefit from thenar supports in the right thumb to stabilize it even better. Nora also encouraged me to work with Jordan on coloring with crayons and digging through a container of beans to find little toys to increase her fine motor skills.
Then Melissa came back in to give Jordan her hearing test. The left tested fine, but because her right ear is so extremely small, she had a hard time getting the plug to stay in. Finally, she just decided to skip it for this time. Jordan has had 3 hearing tests (not counting the ones when she was born) and has never been able to have the right ear tested. I'm hoping that the next time she has it done, we can get an accurate result.
Next, the NP, Jeanie came in to see Jordan. I discussed with her most of the questions I had regarding her overall health, development, and diagnosis. She did an evaluation of Jordan and everything looked good. One of the things we discussed was how Jordan is fairly strong, yet considered low tone and how her reflexes are also delayed. One of the reflexes that is normally gone at around 8-9 months, Jordan still has. These are all signs of the mild cerebral palsy and reasons that she still has difficulty with balance and coordination. Jeanie also recommended that during the dry winter months we use a cool mist humidifier in Jordan's room to keep her airways moist.
Finally, Dr. Burdo-Hartman the pediatric neurodevelopmental specialist came in to answer the questions I had discussed with Jeanie and to evaluate Jordan's progress. She said that she did not feel it was necessary to test Jordan's growth hormone because she had not stopped growing, but was just on a delayed growth curve. This was also why she didn't feel we would benefit from testing Jordan's bone age. She agreed that Jordan's eyes did have dark circles and since her sleep patterns were normal they wondered if there could be some allergies affecting her so we are starting her on Zyrtec to see if it helps. Since we are still no closer to any additional diagnosis but there is still a sense that something beyond the CP could be affecting her, she is referring her to be evaluated by a neurologist. She also wants to make sure that Jordan is evaluated by the geneticist that will be replacing Dr. Toriello next year. The most challenging question was what to do about Jordan screaming during our mealtimes because she wants to eat. Dr. Burdo-Hartman recommended that we give her a sucker that she can have during those times as a replacement to eating. (more on that below)
Overall, this was a good appointment. I feel like I got answers to my questions and a good plan for the next few months! I am looking forward to seeing how Jordan continues to grow and develop and to understand her even better!!!
I was very concerned about the idea of giving Jordan a sucker because it would create so much saliva and she would gag and cough. I called her feeding therapist, Jenny and she agreed that we need to find an alternative option for her. The thickened water in the straw bottle works so well because it has no flavor and doesn't create excess saliva but also because it pushes the liquid to the back of her mouth and she knows to swallow it. By using a sucker, Jordan would have tons of saliva she wouldn't know what to do with and it would be likely to pool and drip down her throat and she could aspirate it. Jenny suggested we try the thickened water popsicle we had used this summer for fun. I made one and we used it during dinner tonight - Jordan sat in her seat with her popsicle and bowl with a spoon and quietly enjoyed her treat while we had dinner!! I think we found the answer we have been looking for!!! I will be making a full batch of popsicles in the morning!!!
