I have been battling headaches and dizziness since Wednesday. I just went to the doctor this morning only to have him tell me it appears to be something viral. We did run a blood panel and are waiting on Prolactin results Monday to see if I am having any issue with my Prolactinoma. I have been off medication for well over year now but it has been months since I checked my levels and these symptoms this week can be typical of elevated Prolactin levels (I have a small tumor in my pituitary gland, I was on medication to prevent it from growing for about two years but after the boys were born it seemed to stabilize so they took me off medication).
So needless to say it has been a long week. Shane has taken time off where he can and the boys have had to fend a lot for themselves. They are mostly good about playing with their toys (thank goodness) but we have missed their therapy appointments. Hopefully everything will clear up over the weekend so finally next week we can return to our normal schedule.
I made several phone calls this past Monday. We are in the process of trying to get a consulation approved by our insurance so we can take Jonah to the UCLA Center for Cerebral Palsy. I spoke with the boys' nursery leader about Jonah getting a one on one worker for church and she agreed we would continue to monitor their needs over the next few weeks and make a decision. I told her that if it needed to be me then I was obviously more then willing to be called to work with him. It has also been a frustrating week for vision therapy. Monday I received a voice message left by Dr. Sutter asking that I call her because I had canceled the follow up eye dilation and exam for Jonah in June. She said that she needed to talk to me because there was such a discrepency in the lenses that Jonah wears now and what she had prescribed him. I was furious. Not only has Kern Regional been telling Dr. Sutter from the beginning that we were ONLY coming to them for vision therapy but I made it very clear to her office that being she is an opthometrist and NOT an opthalmologist all decisions about Jonah's glass prescriptions would be handled by Dr. Kelly in Madera. I could not believe that after all of this she was still trying to push her opinion on us, over a specialist!!!!! I didn't bother returning the call and instead called my case manager at Kern Regional who documented what happened and after much discussion we decided to end the service. Jonah went a week ago Friday to meet with a therapist at Dr. Sutter's office. I was only half impressed. She did several things that were not consistent with someone who would have a good understanding of CVI and she assumed that simply because he had ROP as a preemie he had retina issues (which it is clearly written out in his history that his eyes are anatomically fine). I asked why they did not use light boxes with some of their therapy work and I was told they were "too expensive" and they felt they could better manipulate other resources.
After all of this, I once again called Blind Babies Foundation. My contact in Visalia that met with us back in January and lent us the Little Room for Jonah is the very person that I once again called. I explained my frustration and told her we had absolutely exhausted all resources. She said she had a few calls from other families in Kern County regarding the same issues. I told her we had to do something for Jonah, that we were willing to drive him a couple times a month and pay out of pocket to get her to work with him. She still does not seem open to this idea BUT she did agree to work out a therapy plan this weekend with me over the phone. She said we could set a plan to work on for the month and that she would touch base with me at the end of the month to see about progress and what to plan for the next month, etc. She also said periodically every couple of months when we were down in Madera for specialist appts she would agree to meet with Jonah to see what he is doing visually.
For now, this is my best option. It is just so frustrating. He needs someone coming in at least once a week and working with him personally. I am going to do my best but with trying to keep both boys out of trouble and with Noah getting more and more mobile and in to everything there are some days that I am lucky to make it through the day. All I can do is hope for the best now.
I certainly pray that our next chapter in life will take us some place that is better able to provide my boys with what they need. This is all I can do, is pray for a better future.
That is the latest. Hopefully these migraines will be under control by the end of the weekend and next week we'll be back in our schedule. We are looking forward to Grandpa coming back on the 20th of June!