Friday, May 29, 2009

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!
More cute photos of the boys. Jonah loves his mylar pom pom and we got some darling photos one day when he was playing with it. The first time Noah played in our kiddie pool he was fascinated with the hose. These boys get more and more adorable every day!

My first fondant cake. I still need a lot of practice but I enjoyed working with it. Thanks Brooke for your help!
Cute photos at the beach. My camera died before I was able to get any of Shane and Jonah playing by the waves (sadly) but at least I got a few adorable pics!

Sunday, May 24, 2009

Grandma Hanna left for Oregon Friday. We want to thank her for all her help and support these past couple of weeks. We are so lucky to have such supportive family.

Saturday we took a much deserved break and went down to Redondo Beach in Los Angeles. The boys enjoyed a sunny day playing in the sand and becoming acquainted with the ocean. Noah wasn't sure at all about waves and wouldn't let Shane put him down. Jonah didn't seem to be so bothered by things, I don't know if this is because he did not have the visual of the waves coming toward him or not. He did not seem to mind the sound of the waves nor the crowds of people so I was grateful for this. He also enjoyed the feel of the wind and enjoyed sitting in his chair and playing both in the sand and with his toys. Noah was completely curious with everyone and had fun waving and clapping hands at anyone who would stop to watch. He definitely is our charmer.

We enjoyed a late lunch on the Pier and after drove home. I, stupidly, was not careful with the suncreen and ended up with a horrible burn that has been very painful today. I made sure the boys were coated down with sunscreen but did not think much about myself. Today I am definitely paying for it.

I wish we could say we made the day without any nemesis episodes but unfortunately after trying some ice cream Jonah managed to bring up his lunch and later Noah added to the mess after deciding to try sand. *Sigh* Always a fun time with the Hanna bunch. Despite it all, we had a great time and even hit Carters on the way home for their Memorial Day sale.

Today was the first time the boys attended church nursery. I would say things went ok. Jonah started out the day extremely fussy, he is bringing a molar in up top that is really bothering him. We almost didn't make church because he didn't keep breakfast down and was really cranky but we eventually decided to give Sacrament a try. We had to sit out in the foyer because Jonah was not up for much but after we decided to try out nursery. Noah enjoyed playing and being with the other children. He is the smallest of the bunch, most of the boys are over two and much taller but Noah didn't care. He didn't even mind when one particular child kept stealing his toys. He'd just pick up another. He laughed and clapped at singing time and loved playing with the bubble blowing machine. For snack time we brought our own treats and Noah wasn't in a mood to eat so he managed to throw his treats on the floor. Jonah did ok with Dad until one of the boys got very upset which set off Jonah. Shane rushed out and tried to make the bathroom but ended up wearing Jonah's throw up. Thank goodness I packed extra clothes.

After today I definitely feel like Jonah is going to need his own one on one nursery worker. The nursery is packed full of high energy boys with only a couple of girls and the one worker there today had her hands so full she would never have had time to even deal with Jonah. I can't stand the thought of him being put in a corner and expected to play by himself. Two boys fought over his favorite toy and if Shane had not been there to stop the scuffle who knows what would have happened.

Thank goodness we have a lot of support as I plan to talk to the nursery leader and ask what she thinks would be best for Jonah. For now, Shane and I will be in the nursery for the next month until the boys are settled and Noah is comfortable with us being away from him.

I may have a new church calling coming in nursery. =) I plan to tell the nursery leader that even if it means assigning me as Jonah's one on one helper, I plan to help him so he too can enjoy nursery time.

I had an interesting conversation with a local woman tonight about some therapy options. Her son has mild cerebral palsy and they have enrolled him in intensive therapy plus hyperbaric treatments. Apparently there is a center in Florida that does back to back treatments of both. She paid quite a bit out of pocket for a month's worth of therapy. It was interesting to get another's opinion on alternative treatments. I still have not found conclusive evidence that hyperbaric treatments are helpful in the case of cerebral palsy. Several months ago you will recall I emailed UCLA and their response was that there is no evidence showing that hyperbaric treatments aid with CP. I did share a watered down version of this with the woman I spoke with but she seemed to be such an advocate of the expensive treatments that I did not pursue it further.

She did mention the UCLA Center for Cerebral Palsy and that her son (a bit over 2) has an appointment this week to go and meet with their team of specialists. I remember researching UCLA a few months ago for any stem cell clinical trials when I ran across the center's Web site. I knew at that time that once Jonah's diagnosis was definitive I would start going to this center for treatment.

After speaking with this woman tonight I feel inspired to call the center this week and see if we can get Jonah in for a consultation. I don't want to waste any more time and I know he needs to start seeing specialists that have thorough understanding of the disabilities he faces. I think in the end we will probably switch over to UCLA as this center makes referrals to neurologists, opthalmologists, etc.

I have some research to do regarding the extensive therapy using the "neurosuit" that this woman spoke of tonight. I want to make sure that what we are looking at is something that really could benefit Jonah before we go and invest several thousands of dollars in to the treatment. I really feel that so many so called "specialists" take advantage of the thousands of families who have special needs children by promising the world and more when in reality it is not even a viable option. This same woman tonight spoke of stem cell treatments in the Dominican Republic and some place in Ecuador that supposedly mails stem cells to California and then you coordinate with a California doctor to do the transfusions. I just feel people in these situations are being mislead. All my conversations with Duke University lead me to believe that you absolutely have to be so careful about these treatments and seek out institutions or medical treatment centers that have evidence of successful treatments and/or research. You can't be too careful and it angers me to think of those many doctors taking advantage of desperate parents who are putting hope wherever possibility may be.

Anyways, we will keep you updated as we pursue these options.

For Memorial Day we have a BBQ at the Hansons. Their kiddie pool will be out and they have a beautiful backyard so the boys will enjoy themselves. There will be homemade ice cream, etc. I plan to make a low fat version of a seven layer dip. Later that night we plan to go see the new Ben Stiller "Night at the Museum." Amy Call will be watching the boys.

Some time this week I will need to clean down the boys' nursery room at the church since I offered to do it. I want to clorox all toys and I brought home their quilts, etc. for washing. Their tables and chairs also need to be disinfected. I am going to look for a bright, fun, wipeable table cloth that I can put over their playing table as it is pretty beat up and their nursery leader wanted to do something with it. I figure my boys have special needs but I can't expect everyone else to jump through hoops without offering to help myself.

This week will be busy, busy. We have play dates, therapy and story time on Wednesday. I have my fondant class Wednesday night and will be making my first two-tiered fondant cake. I just need to figure out what decorations I am going to do.

Until next time. God bless.

Saturday, May 16, 2009


It has been another rough week here at the Hanna home.

First, we have to thank all the prayers and well wishes this week.

Noah came down sick a week ago, Saturday evening. By Sunday morning he was both throwing up and having severe diarrhea. By noon that day we knew that he was suffering from dehydration. We packed up quickly and drove as fast as we could to the Children's Madera Hospital (CHCC).

I thought perhaps he was suffering from a bit of a stomach bug but after being hospitalized for two days for dehydration and non-stop diarrhea they decided to run further testing and sure enough, things came back positive for Rotovirus.

By far this was the nastiest virus Noah has had in some time. He finally started to make a turn Thursday when he started to eat again. The doctors decided to keep him on watch at the hospital until things were definitely under control because he is smaller for his age and has such a limited reserve. It really does not take much to get him dehydrated.

Thankfully finally yesterday we started to discuss sending Noah home and by this morning he was eating normal (at least for himself) and his diarrhea had decreased considerably. We were discharged this morning and we are so thrilled to be home.

We've had the house disinfected from top to bottom. Carpets upstairs, everything. Apparently the virus is extremely contagious. We've had to cancel all therapy next week because the virus sticks around in the environment for some time.

I look forward to getting back to a normal schedule and I pray that this third hospitalization in two months is our last for some time. We dodged the bullet for almost a full year and the boys seem to be making up for lost time. I can only pray that this is it for a very long time.

We are finally home and thanks to Grandma Hanna Jonah has been well loved and well fed! He has gained back his lost weight and is once again filling out. We now have Noah to worry about because he has lost around half a pound from this week.

Thanks again everyone for your love and prayers. We are so blessed.

Tuesday, May 5, 2009

Our new friend............

We have decided to trial the boys on the Juice Plus Vineyard Blend supplement. After much discussion with my cousin in Utah who has two children with special needs I am convinced of it's effectiveness. Bonnie has said that her autistic son, Freeman, has been HALF as sick this past winter since being on the Juice Plus. It is a high antioxidant supplement, all fruits (mostly berries, etc.) It is also good for our Mr. Jonah because of the research showing the power of antioxidants with neurological repair/disorders.
The boys continue to be sick. Jonah is mostly better aside from some nasty congestion which picks up first thing in the morning. We are trying to help Noah get over a yucky cough. Sunday night he was pretty restless and did not sleep well. We've had the humidifier on him since yesterday and he seems to be doing much better. He wasn't keeping things down well yesterday morning but after a round of pedialite things seem to be a bit better. We have been at home the past couple of days trying to get over things, the break from therapy has actually been nice!

We have been enjoying Grandpa Langston. It is always nice to have him here. We are back on South Beach diet this week. It is a tough diet but we are working hard to see it through.

The weather has been really sunny and nice here. Thank goodness it has not started to get too hot yet.

More later...