Wednesday, January 28, 2009

The above frames are what we chose for Jonah (vote above on what color we should choose!) through the Disney line. My goodness, frames and lenses are expensive...even for babies. Next time I think we'll buy his frames online. It is a good thing that Kern Regional offered to reimburse us this time as our insurance won't pay for the glasses.

Also, good news. The director of Blind Babies Foundation agreed to meet with Shane, I and Jonah on Saturday morning. We are taking the long drive down to Visalia to get a sturdy Little Room and Resonance Board. She was so kind, she isn't charging us for the materials but asked that we return them after Jonah grows out of them. I was so excited! She suggested we use the Little Room built out of sturdy wood as it will coordinate better with the Resonance Board (Shane and I were going to put one together out of a cardboard box). She also is going to spend time with Jonah, assess him and give us good ideas of what we can do at home to work with him.

In other good news, I heard from our case manager today and she was able to speak with the Visual Impairment specialist of the school district. He has decades of experience and also has a blind daughter. He is taking on Jonah's case and is going to see if we can't get him some in home services that would work.

So it seems that the squeaky wheel has indeed got the grease this go around. Hard work has paid off!!!

Tuesday, January 27, 2009

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.....

Sunday, January 25, 2009

A cute photo of Daddy playing with Jonah at bed time. Here is the famous photo of the day Noah took his first steps with his walking toy!

Brother, I will follow you....

I love this photo of Noah. Whenever Jonah is in his Discovery Center Noah immediately goes over to his brother to play.
I love this video of Noah playing with his pony that Grandma Hanna gave him for Christmas! He has figured out how to scoot it all over our tile floors. So cute!!
video

Friday, January 23, 2009

Jonah is getting glasses! That was the conclusion after today's visit to Dr. Kelly. We will hopefully get him fit for them next week.

Another exciting thing for today. Noah pulled himself up to standing with his walking toy and took a few steps. We are making our way toward walking!

I will post some cute pictures soon of both boys.

Michelle

Thursday, January 22, 2009

I haven't posted all week but we took Jonah in Monday to the doctor after a long weekend of cold like symptoms and horrible congestion. I had a feeling that his ear infection had not recovered. Sure enough, after a visit to the pediatrician we found out that Jonah's ear infection had not cleared up.

Now we have both boys on the same antibiotic and they seem to be finally turning a corner. Jonah still has a horrible runny nose and both are still coughing here and there, they seem to have caught something viral a long the way. I do think that we are finally turning a corner.

Jonah stayed home from therapy and today finally made it back for occupational therapy. Tomorrow both boys go for physical therapy and then we head to Fresno for Jonah's eye specialist. She called me today to confirm that she wrote a prescription to try therapy with the local developmental optometrist.

Earlier in the week we had beautiful weather and had a few nice walks around the park. Today was rainy and tomorrow is supposed to be the same.

We'll keep you posted regarding our visit to Dr. Kelly.

Friday, January 16, 2009

Feeding fun with Noah. I thought I would share what great adventures we have when trying to get food in to Noah. His favorite thing to do right now is stick his hand in my face to stop me from feeding him. Note: the below behavior is after only maybe 4-5 bites of food.
video
Poor Noah still has an ear infection! We took him in first thing this morning as both Shane and I spent a mostly sleepless night with Noah waking up every hour crying. Apparently the omoxicillin was not successful in getting rid of the earache so we are starting another 10-day course of a stronger antibiotic today. It sure explains his behavior!

We hope Jonah will not regress. He woke up this morning with congestion and a runny nose. Hopefully he will snap out of it.

I go in at 2:30 to meet with my doctor to see about a new course of antibiotics as I am sick again too.

I guess the saying is true, once one family member gets sick the whole family does!

We finally threw in the towel with Junior League of the Blind today. We have been disappointed in their vision services for Jonah over the past 9 months, during which I have even switched therapists in hopes the second would be better. She was marginally better with Jonah but now she is on maternity leave and her replacement is a waste of our time. I seriously wonder how the LA office would feel if they really knew the quality of specialists they send out to work with these visually impaired kids in Kern County. I am glad I have a good relationship with the boys' early start services case manager through Kern Regional. She has been following me through this journey and today we decided to give the developmental opthometrist here in town a try. It has been a bit of a controversy because apparently this particular doctor is too quick to put kids in glasses, even when a specialist says no. Our Fresno specialist does not have the highest of opinions regarding her practice but at this point we have exhausted the other alternative. So we will trial this and see if we see more of a benefit from the vision exercises this practice will provide.

It has been beautiful weather in Bakersfield. High 60's and sunshine. We went on a nice walk on Wednesday in the park and the boys enjoyed their new Baby Jogger stroller as we walked vigorously through a mostly empty park (thus no exposure to germs!) I wanted to get out today but between doctor appointments, no sleep and Jonah's physical therapy I'm not sure we will make it. I hope this great weather stays around for a long time! I was really getting tired of the fog and grey skies!

Have a great weekend!

Thursday, January 15, 2009

I decided a few months ago that I would try very hard to remain positive while posting on our family blog. Prior to that I had been very honest and open about feelings, struggles, etc. about our journey as a family.

I have since decided to try and only post updates and or positive information but tonight I just had to educate you as our friends, family and others who follow this blog.

Please know that we are fully aware of our challenges as a family. Our days are not always easy, we have many moments when we wonder, why? What if? We ask ourselves all of those unanswerable and really, unhelpful questions. Thus far, we have been able to overcome these emotions...some days better then others.

However, as our friends, family and all those who support us. Please, please, never tell us that you are so grateful you do not live the life we have or you do not know how we live the life we have. It is hurtful and does not empower us as a family.

For those of you who have embraced us and supported us during our challenges we love you. For those of you who are still trying, please keep trying and know that we need you. Don't give up, keep trying.
Good news. The GI Clinic went well today. Both boys are doing really good for their height/weight gain. The doctor we met with was really impressed that they've gained and grown as much as they have, especially for being 24 weekers. Jonah is in the 50th percentile and Noah the 25th percentile. It is truly a blessing from above that neither has yet needed a feeding tube and has gained weight appropriately.

We have new goals for feeding. We are still trying textures out. We started today adding Wheat Germ instead of Oatmeal to all the Stage 1/2 foods the boys are eating. We also will be adding one piece of small pasta/veggie, etc. to a spoonful of pureed food and gradually as they tolerate increasing the amount until they can fully tolerate the Stage 3. We determined Jonah is just not yet ready for the sippy cup and may need a few more months over which we can still attempt trying him with one and we will continue with the NUK exercises for both coupled with holding Jonah's chin up after he takes bites of food to help him learn that eating requires closing his mouth and keeping his tongue in (he tongue thrusts a lot) when eating.

It was a long day, but productive.

Poor Noah is having a reaction to the antibiotics he was on last week. He has developed a nasty yeast infection and we started a prescription ointment yesterday afternoon. He had me worried last night because he had a couple of stools with small traces of bloody mucus. I did read this can also happen as a result of yeast infections but there is a lab order now at our pediatrician's office for Noah's poop to be cultured to make sure he hasn't developed any internal infections from the antibiotic cleaning out all bacteria from his GI tract (apparently this can happen, especially with babies). So tomorrow is his poop culture. He started up with a fever of 100.2 tonight. If this continues tomorrow we will take him in. In the past this has happened with teething. We just continue to give him Tyenol, etc. and it passes....but all the symptoms together are a little unnerving. We have been on the phone with his pediatrician all day and the GI Clinic ordered the poop study plus double checked his rash to make sure the ointment we are using will work.

So hopefully tomorrow goes well and Noah's fever subsides.

That is the latest at the Hanna home.

Wednesday, January 14, 2009

Tomorrow we head to Madera to meet with the GI Clinic as well as the boys' feeding therapist. I assume they will be happy that the boys are continuing to gain weight. I still wish that Noah was gaining more steadily as well as his length, etc. Hopefully they will be happy with what he has gained but I plan to ask specifically about his length.

We meet with their feeding therapist tomorrow and of course, our number one topic will be that the boys still aren't tolerating texture very well. Also, Jonah is fighting us on switching to a sippy cup. Change is definitely hard for him.

Today was interesting. We met with Jonah's orthotist. It seems that after consulting with the manufacturer of Jonah's helmet the conclusion was made that his head has changed as much as it possibly can. We were talking of doing a second helmet as we pretty much have gotten as much use possible out of his current one. Unfortunately the manufacturer said that even with a new helmet and another few months the difference would be so small it would not be worth our time. With Jonah now being 15 months old (adjusted age 11 months) his sutures are closing and change will be difficult. While I know Jonah's neurosurgeon mentioned last month he has not seen much change come from helmets I still hoped to prove him wrong.

So it was a bittersweet morning. I am glad that Jonah won't have to wear the darn thing anymore as it really has been hard on him. I am glad that we won't have one more appointment to try and juggle but I think I felt more disappointment this morning. I really wanted Jonah to have every opportunity to reshape his head. I am glad to say that there has been some change and his head is better. I think with a full head of hair (which hopefully will grow in better now that he does not have the helmet) things will turn out just fine.

So, this is the latest at the Hanna home. We'll post soon and let you know how things go in Madera.
Bath time fun!



Thursday, January 1, 2009

I forgot to post earlier this week an update on the boys. Noah had his first ear infection this week. He is on antibiotics for the first time since being home from the NICU which is pretty darn good!! I started getting sick right after Noah (now I have lost my voice) and Jonah has started up with similar symptoms as Noah so tomorrow we both might be going to the doctor!!

Also, Noah is finally crawling and getting in to everything! We are having to start baby proofing. He is pulling himself up on things and loves to pester his poor brother. He crawls over to the swing when Jonah is in it and grabs his feet and stops it. He also loves poking Jonah's face and stealing his toys. Let the fun begin! I keep telling Noah he better not pester Jonah too much as Jonah is the bigger boy and some day it might be pay back time!
Happy New Year! We celebrated last night with good friends over a meal of fondue. Pictured below are Shane, myself, Tracy and Ryan Bond (yes, as in James Bond!) and Brooke and Blaine Hanson.

We put the boys down around 7:30 upstairs and they were very good. They slept soundly and didn't even wake up when our neighbors lit up fireworks at midnight.

We hope 2009 is a healthy year for everyone!