The Hanna Family

Well, it certainly has been one of those days.

After all this fuss about getting a new vision therapy program for Jonah we are running in to huge problems with this new doctor before we have even begun anything!

Apparently they are trying to get us to agree to a bunch of expensive testing, half of which does NOT need to be done because Dr. Kelly (Jonah's specialist in Fresno) is overseeing the medical side of Jonah's needs, which was stated several times to Dr. Sutter's office. They are still asking for testing, including a Visual Evoked Potential test. Now I have heard from several sources, including a trusted therapist at Blind Babies Foundation in Fresno as well as Dr. Kelly that this test is not an accurate measurement of vision for children as young as Jonah. To top things off, the testing is NOT covered by Kern Regional Center so now Dr. Sutter's office is asking if our insurance will pay for it (of course not).

After several phone calls yesterday and today I finally spoke with our KRC case manager and she was very discouraged by the confusion that Dr. Sutter's office has created. The regional center is having to review their contract and their quality assurance team is looking at maybe even breaking contract because Dr. Sutter has made so many demands that fall outside of their agreement. To make matters worse this assistant is telling our case manager that they won't offer therapy services to a child as young as Jonah. Again, what is going on? Our case manager told me today she read, verbatim, their contract with this office staff member stating that services from the ages of 0-14 would be provided by their office for children with vision related issues. She said she left the woman speechless and unable to answer why she was telling her that therapy could not be offered for Jonah.

I think I have it figured out. From the first phone call when they started saying that Jonah would require a medical review by Dr. Sutter, an eye dilation study, etc.,etc. I said NO. We are not coming to you for medical review and or help. Dr. Kelly will be overseeing anything related to Jonah's medical needs. We are coming to you for THERAPY and therapy ONLY. An hour later I got a call back stating the doctor wanted the tests done to which I said, "That is fine but I am the parent and I have the right to refuse. My son does not need his eyes dilated nor does he need to have an eye exam. We already have a prescription for eye glasses and he does not need this done."

I think it comes down to the fact that between me saying no and our early intervention case manager saying no they are clearly upset. I have been told by several professional sources that Dr. Sutter is really money driven and very excessive.

But what are our options?

This brings me to the next problem. If Dr. Sutter's office refuses to provide Jonah services there is nothing KRS can do. We can't do anything either. If that is the case and we have turned away Junior League of the Blind we are left with nothing.

I was so upset today. I am tired of living in an area that is two hours outside of Los Angeles and Fresno as both areas are rich in pediatric services. Yes, our regional center is one of the best in the state for services but that is because we are lacking in so much!!

I took it upon myself today to call the Blind Babies Foundation which has been a referral by Dr. Kelly as well as a good friend back east (hello Amanda!) whose vision therapist is phenomenal. I have been complaining to Dr. Kelly so she said she would contact the foundation but today I had just had it.

So I contacted the director and she and I spoke for 45 minutes. I told her everything from start to finish. She said she has been following things with the Junior League for two years and it seems in the past few months things have just exploded in way of issues/problems. I told her we have no resources here outside of Dr. Sutter, to which she added that her type of therapy was more medically based and not as affective. She gave me suggestions of things to try immediately with Jonah and we talked in length about what she calls the "Little Room" and a "resonance board" which can be placed underneath so each time Jonah moves his body the board resonates and hopefully encourages Jonah to move more. She brought this up when I told her that Jonah was struggling still with rolling. She said that because babies with CVI have no visual cues they are not motivated to explore and seek after things in their environment so we have to figure out what can encourage them. We have known this for some time and even I have heard before about the Little Room from Amanda as she copies many of her therapy notes and sends them to me (a true friend!) The Little Room is also used to stimulate babies with CVI as it is an enclosed box with different textures, mirrors, auditory toys, etc. Of course to buy it online it costs a mere $1,100. No problem right! HA! Thank goodness I was able to dig through my notes sent to me by Amanda and find the one with suggestions on how to economically afford putting together a Little Room. Shane plans to put it together this weekend and we plan to buy $5 plans for the resonance board as it really is a thin piece of plywood and nothing more. I bought a black tri-fold today from Office Depot to replace the felt black board that Junior League gave us to enclose Jonah when on tummy time so he can better focus on his toys. I also found a cheap black twin comforter that we can use to spread out underneath him so he can concentrate on his toys with as little distraction.

In 45 minutes I had more suggestions and direction from this foundation's director then I did in 9 months with Junior League of the Blind. Shane and I have discussed and we feel it is important enough that if it is necessary we go to Fresno twice a month to meet with this therapist and pay out of pocket so that we can learn and Jonah can learn how to better develop his vision. She was an angel on the phone today to spend so much time with me and was truly concerned. She was going to call the regional center and talk to my case manager as well as talk about another therapy option for KRC. Apparently she has a former coworker who went back to school for additional vision certifications who has opened her own clinic about an hour from here and she thought she might be a closer and good fit for Kern County.

If nothing else, I hope I got the ball rolling because the children in this area who suffer from visual impairments need the same kind of top services offered in Los Angeles. Vision affects everything, it is too important to waste any more of Jonah's time on trivial therapy that is just not effective.

We are still waiting to see if the situation works out with Dr. Sutter but it really is sounding unlikely and frankly after the hassle of the past few days I'm starting to feel very uneasy about following through with them.

I planned to have Jonah's frames and prescription filled by their office but that is my next job to find another optometrist where we can go to get Jonah's glasses.

In other news (yes, there is more!) yesterday at Jonah's OT appointment I ran in to a mom whose 15 month old daughter was in a helmet. We got to talking and I told her of our experience and she said she had been going to an orthotist in Torrance and they were referred there by the Plastic Surgery department of Childrens LA. She seemed a bit shocked that the local orthotist had given up as she said her daughter will be in her helmet until 3. Now, her child does not have hydrocephalus nor a shunt so she did admit she did not know much about our situation but she said her daughter had birth complications and suffered a stroke in a recent surgery so her brain was growing very slowly (same as Jonah, the reason we were told his little change was the reason another helmet would not be helpful). So I decided we are getting a second opinion. I am getting the records from the local orthotist faxed over to Childrens LA and as soon as we get in to our new pediatrican (Dr. Ho) with Blue Cross in the next couple of weeks I am asking for a referral. I hope our insurance will cover it. It would at least put my mind at ease if they told us we have done everything we can, otherwise I know it will eat at me not to know.

Noah's vomiting continues (fun, fun!). I am at my rope's end so I contacted his nutritionist yesterday at the GI Clinic about maybe switching his calorie supplement as it had been mentioned in our last appointment there was one that might be easier to digest. After two phone calls and reviewing their growth charts (to which she was encouraging and said that really both boys were doing well) we decided to start the Arithromycin. In fact, after Noah's two throw ups in the car this afternoon (we were trying to run some errands and take a quick walk at the mostly empty park) because he hates his car seat, I went straight to the pharmacy and filled that prescription. He took the first dose tonight. I am praying and praying we will see an improvement and that every single feeding time will not continue to be such a nightmare of a battle. I know it can't be fun for Noah too to be forced upon to try and eat. Yes, I have resorted to forcing the first bite of food to get him started which at least gets him going lately for a few more bites. I know everyone tells me not to force anything but if your child is not eating anything, well sometimes you compromise! A big part of this battle has been his sickness, after a full month of the boys being sick with ear infections and viral symptoms I think Noah is finally getting better (Jonah still has some residual nasal drainage but I think he is turning the corner). So tonight, say a prayer or two for Noah. Let's hope this medication helps! I really had a hard time deciding to try it as I don't want to deal with resistance to an antibiotic and I don't like having him on it long term but honestly, we are out of options.

Sometimes I have a hard time believing that it is only Tuesday. Didn't just ten years pass by in the past two days? Goodness, sometimes I feel like I am 110 years old. I look around at the other moms my age and I don't even feel like I relate. It can be a lonely feeling but I have always loved my friends and the importance of friendship so I have found how to compromise. I don't think I could live without friends and I am learning the true importance of really listening and being there for other people, after all being a friend is really giving of yourself. Maybe that is a lesson that God is wanting me to learn, the value of genuinely listening and supporting others.

Well, that is the latest and greatest at the Hanna home.

Until next time.....