Jordan started in feeding therapy at Mary Free Bed a few weeks ago. We were unable to schedule with Ellen, the OT that worked with her last year before getting her feeding tube put in and who performed her swallow study in the beginning of July, because she had no openings for over a month. We started therapy with Jenny and have had several sessions. We started Jordan on pureed peaches and yogurt - just very small tastes on the back of a spoon or on the end of a Tic Tong. We found she seemed to know to swallow more often when the food was VERY cold so we stick it in the freezer for about 15 minutes before feeding her. To encourage a second swallow, we used a chilled metal spoon between tastes of food. Jordan often started the session doing well, but would gradually start to sound wet and coughing more frequently.
Jenny decided to try thickening water and using a squeeze bottle with a straw. We also shake it with ice when thickening it so that it is very cold. Jordan does very well taking little sips of water!! She actually learned to seal her lips around it and suck which is a great oral motor skill for her to learn. She normally gets between 5-10 sips per meal of thickened water and still sounds clear.
This basically has led us to find that Jordan is able to best handle almost pudding-thick liquids through a small straw. However when we tried flavored drinks (ie - kool-aid or yogurt), we found that she sounded worse. What is happening is that flavored foods create more saliva and Jordan is able to handle thicker liquids but not thin liquids (which saliva is). Therefore, we have come to the conclusion that Jordan needs to stay away from flavored foods and just stick with water for now. Because of this, Jenny is unable to make forward progress toward Jordan's feeding goals and will be discharging her soon. We will follow up with another swallow study in a few months to watch how she handles various temperatures of liquids through her squeeze bottle.
One of the goals for Jordan to work on in the coming months are oral exercises. I have some stretching techniques I will be doing for her cheeks/lips areas and if able to get my finger or a probe in her mouth, some cheek/gum stretches. For fun, Jordan and I get to find lots of toys that require oral motor skills (whistles, blow toys, kazoos, etc) and work with those to help her learn to create a seal around something and blowing and the positive response she gets from that action. We stopped by a dollar store this afternoon, but didn't find anything. If any of you see something that might be a good oral toy for her (including safe for a 2 year old and under a few bucks), please pick it up!! I will be happy to reimburse you!!!
Another thing that is happening is that Jordan is going to be having a few sessions of physical therapy at Mary Free Bed over the next month to work on some strength and balance. We are only able to cover a few co-pays so we will probably only have 3-4 sessions. Because Jordan is so active and busy they feel she will likely meet her milestones delayed, but within reasonable time.
As far as insurance goes, we have been frustrated by the fact that the Children's Special Healthcare Services which currently covers all of Jordan's swallowing issues, will not pick up anything for her cerebral palsy. Because she has been diagnosed as class 1, that is considered a developmental delay rather than a disability and so they don't cover her therapy. They said that if she should need orthodics, they may cover them under a special fund category, but they will not cover the overall diagnosis.
We also received our first check for Jordan under Social Security Disability. Unfortunately, due to a misunderstanding during the interview I had at the office, they thought we had checking and savings accounts at 2 banks (they had one listed but I corrected them with the actual bank we have accounts at - they included both under our assets). Therefore, they thought we had more money than we do, and we were considered financially ineligible. Now I am in the process of applying for "reconsideration" due to the inaccurate info. I imagine that this might take quite a while to correct so in the meantime, we are carefully using the 2 months income we did receive to cover medical bills and set some aside for her upcoming therapy.
We were also encouraged to apply for medicaid for all 3 of the kids on the chance that their medical expenses might be covered in full. I am finishing that paperwork and should get that out by the end of this week. I am hoping that well visits, sick visits, and prescriptions will be covered for all 3 of the kids!!
As far as Jordan's speech goes, she has been making amazing progress!!! She is trying to say words more often and some of them are even recognizable!! She has recently started saying "uh oh!" which is absolutely adorable!!! She is also now saying "mama" and "dada" which Derrick and I LOVE!!!!! This fall, Ken-O-Sha has agreed to have a speech pathologist come to our house for our home calls rather than a physical therapist. This will give Jordan and myself an opportunity to work one-on-one with a therapist learning some techniques for successful speech. For her group at school, she will be in a Speech Plus group for kids with speech and motor delays. They will work on both speech as well as physical therapy. The school is also allowing us to be a part of an educational class this fall through the Hanen Group called "It Takes Two To Talk." Derrick and I will be attending on Monday nights to learn how we can better encourage Jordan's speech progress. There are also 3 sessions where they videotape us interacting with Jordan to see what we are doing well and what we need to work on. We are both looking forward to this opportunity to learn more about what we can be doing to help her.
Well, I think that's about it!!! It has been a crazy, busy summer and I have LOVED it!!!!! We will be taking a family camping vacation in the Smokey Mountains in Tennessee in only a few weeks and I am so excited to have a chance to get away from our busy day-to-day lives and enjoy God's beautiful creation and my own wonderful family!!!
