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.

2 comments:

LISA said...

Hope Ethan didn't cause your boys trouble in nursery! He can be very strong willed and definitely falls in the category of high energy. The week I subbed in nursery I was in there the first hr by myself and it was truly exhausting trying to manage any order. It isn't ideal by any stretch of the imagination! We need change so bring it on. Maybe they will listen to you since your boys have specific needs. I have made suggestions in the past that simply got tossed in the wind. Our new nursery leaders have not been in long so maybe things will change with your help. Push for a bigger space. That room goes against so many child development principles and creates many of the situations in there.

Amanda said...

You are such and inspiration! This last post was full of all sorts of things you have on your schedule...but the one thing that stood out to me was that fact that you and Shane are going to the movies. Jeff and I haven't been to the movies since Dec. 2007! (before hunter was born) I'm planning on going to the new harry potter movie in July...but I don't think I need to plan two months in advance to go the movies!