Monday, March 30, 2009

It is a "no go" on UCLA. I just called their CP foundation and they are not doing anything with stem cell right now. I even referenced Duke and they still said at this time there is no intention to pursue stem cell treatments.

What a shame.

Onward we go.
My husband does not like the saying, "the squeaky wheel gets the grease..." He is much too concerned with proper diplomacy (not that I am saying any thing is wrong with diplomacy) but as it seems to be when dealing with the dozens of therapists, specialists and doctors who attend to my babies I have to be a "squeaky wheel." I make no apologies. My boys deserve the absolute best and I will fight so they get it.

I have been frustrated (but unable to even think about this past week) with the vision services that we pursued through the school district. Many of you know through prior postings that the once a week sessions with the LA group, Junior League of the Blind, where useless and their therapists were young gals with day care experience who they stuck in libraries and expected all the vast knowledge of vision care to somehow absorb in to their very inexperienced little bodies. Because of this, I complained to our Regional Center case manager. She put us in touch with the VI specialist through the school district (yes, just ONE for 100 visually impaired children...this makes me ill to even type that). He is a wonderful man whose daughter is also a 24 weeker and has been blind since birth.

He came a month ago to assess Jonah. He offered a few new tips to utilize when working with Jonah, i.e. focus on communication in all situations to help Jonah interpret his environment, continue working with toys that have light or can reflect light easily. He said he would probably see us once a month. What?

I remember that day calling our same case worker and saying, "Wait a minute...not much at all can be accomplished with a once a month visit." This past month we awaited the final paperwork and assessment from George so we could sign off on starting the services. Well a week and a half ago when Noah first went in to the hospital, my father was given the paperwork by our infant specialist from Richardson Center after she finished working with Jonah.

My father told me I was going to be upset because the paperwork listed that George would be making a monthly visit for 20 minutes, WHAT? WHAT?

So, finally, today...I called our case manager (bless the heart of Freddie Opine...she has been a true champion and advocate for my boys and taken dozens of phone calls from me concerned with services) and she agreed it was time for me to first call George and then the school district.

I first called the specialist, George, and left a message asking that he contact me regarding the monthly visit and limited amount of time that would be spent with Jonah. I reminded him that Jonah has little if no vision and falls in the "severe" category and so I planned to push for more regular visits but first wanted to contact him.

Wouldn't you know it? Within half an hour I received a phone call from George and he said, with much sympathy, "I know where you are coming from and how concerned you are. I actually live close to you and there is no reason I cannot make the time to come once a week to work with Jonah." Now, that still may only be half an hour but we will take it!!! Talk about an improvement!!!!

I am thrilled that hard work has paid off.

I also have not posted about my phone calls to Duke University. After pestering them for about a week regarding stem cell treatments, they finally called to say that Jonah did not qualify for any current, ongoing treatment programs but that they would keep us in a database for future contact.

I am not giving up yet. One of the nurses that worked with the boys up at Memorial formally worked at UCLA and she suggested I contact their very established CP foundation and see if there is anything at all they could do for stem cell treatments. I had to laugh at her phrasing, "UCLA loves unique cases like Jonah and he would provide a great opportunity for research." Ok, not exactly sensitive but she does have a point.

So, I guess my next mission is UCLA. I will keep you posted.


Saturday, March 28, 2009

My new favorite hobby....

For our fourth anniversary my sweet hubby got me one of the Pandora charm bracelets as well as several charms to start my collection. I have been mentioning how beautiful I found the bracelet for some time now. Even with the hectic past week and a half, Shane still found time to give me something special on our anniversary.

Love you Shane.

What a wonderful day! We enjoyed ourselves at the Blind Babies Foundation Beeper Egg Hunt in Visalia.

I included photos of all the fun activities we enjoyed, including a petting zoo, planting flowers, eating yummy BBQ and the egg hunt itself. We have a cute polaroid of the boys and us with the Easter bunny that I will have to scan and upload. I will say that Noah did NOT like the Easter bunny and Jonah was more interested in trying to eat his furry costume so there were several shots taken in attempt to try and get something reasonable!

We also enjoyed the guide dogs that were brought to the picnic. Jonah was a bit frightened after meeting one who happened to sneeze and Noah was uncertain too but it was good for them to meet the dogs. Some day we may get a special pet for Jonah so I enjoyed seeing these beautiful, gentle animals in action.

Everyone was so kind. We even met one of the board members whose own daughter is blind. She was wonderful. We got to see Christi again who helped us back in January with Jonah.

Jonah just loved the beeper eggs, the volunteers made sure he had plenty of opportunities to pick them out and they were kind enough to let Noah hunt for eggs too.

I was amazed at the turn out and even more amazed at all the wonderful things that were given to the children and their families.

We plan to go to their Pumpkin Patch in the fall and we are looking forward to that event at the same ranch.

After the event we stopped by the Tulare outlets and picked up a few spring clothes (goodness it was 80 degrees today and we were sweating in all that sun). The adorable hat you see on Jonah I got at Baby Gap. He is so cute in hats that I had to take photos and include those too (don't pay attention to the fact that somehow Jonah managed to get half out of his seat belt during the photos).

Happy Easter everyone!

Thursday, March 26, 2009

I loved this quote so much I had to share it on our blog:

"Unshakable faith is faith that has been shaken."

I couldn't have said it better myself.

Good night for now and what a great night it will be for us to finally sleep in our own home together as a family.
We are so excited for this Saturday's Beeper Egg Hunt. The Blind Babies Foundation of Visalia has gone to a lot of work to make this a special day for visually impaired children and their families.
Finally! Jonah is home and after a major scrub down to rid him of the nasty hospital he is eating lunch. I gave him a hair cut and trimmed his long, ragged nails. He looks so handsome in his home clothes and I am so glad to finally see him out of a hospital gown!

Noah has returned to his normal, energetic self. He was just proclaiming his emergent need to be picked up and when I went over I found him without pants, socks or canulas in his nose. nice to be back to what we know as normal.

I am off to try and get things organized in our home as it looks a bit like we have been living in two different places (well, I guess that is pretty much the truth!)

Thank you everyone for your prayers and support.

PS--I am SO glad they are better so we can make the Beeper Egg Hunt this Saturday in Visalia. It is going to be so much fun!

Wednesday, March 25, 2009

Jonah is still not home. He started vomiting again last night and was not keeping food down so the night nurse called the on-call doctor who ordered that Jonah be without food and back on IV until morning. His diarrhea does seem to have improved with medication but we are waiting to see if he can keep food down.

I am home with Noah this afternoon and Grandpa is with Jonah at the hospital. Grandpa called about 1:30 to say that Jonah had thrown up with his first bottle. So we will see what today brings but we want our little one home!

Keep praying to get him here. We need to return to some normalcy that does not include hospitals.

Tuesday, March 24, 2009

We were so close to coming home today! Jonah was cleared to come home about 10:30 AM as his blood work showed everything returning to normal and his chest x-ray was cleared. Shortly after he started a round of vomiting and horribly messy diapers, including one that exploded from out of nowhere while I was holding him on my lap. I, of course, had no other clothing as I thought today we were going home so I was covered in poop. Jonah kept up this cycle for another couple of hours and the nurse and I (both being obviously concerned) decided Dr. Ho needed to be contacted. It wasn't until Shane showed up to relieve me at 3:30 PM that we finally heard back from the doctor. To be safe he asked that Jonah remain one more night and that we start the same anti-diarrhea medication that Noah is currently on.

Noah is home but still has runny diapers, just not as frequent. Hopefully this mess will completely clear up by the weekend as we have our Beeper Egg Hunt this Saturday through the Blind Babies Foundation in Visalia and I have been anticipating this event!

So I am home now, showering and looking at car information for Shane and then I head back to the hospital where Shane and I will spend the night. Tomorrow is going to be our day to return home, at least that is what I am praying for.

By chance we had an administrative office case manager randomly select our room to visit today so Shane and I once more carefully outlined all our concerns. She was very apologetic and promised that they would do everything to better the standard of care in the unit by using our feedback.

I sure hope so as this is the biggest Ped's unit in the area and they service quite a few children!

Well, we will keep you posted and hopefully tomorrow Jonah will finally be home.

Monday, March 23, 2009

Noah is HOME! Oh my, how wonderful it is. I spent a few hours in my OWN home today and felt like I was in a palace. In other good news, Noah is on 1/4 liter! I noticed in the hospital that pretty regularly he was breathing well at 1/2 liter so today I've had him on his Pulsox and at 1/4 liter. So far he is doing great, one step closer to being off oxygen.

Hopefully Jonah is coming home tomorrow. His cultures grew nothing over the weekend. Frustrating. They took a chest x-ray today just to assure he has nothing respiratory going on and we get to wait until tomorrow morning for the results. Maddening! I can't help but think of Madera and LA where within an hour the results would be up on the hospital Web and docs could pull up the x-rays to show parents and talk about results. I could probably post a whole novel about the various sub-par standards that we witnessed during this stay at the hospital. I hate the local hospitals, truly. They are really not up for taking care of children of this acuity. We don't even have a PICU here, just a Ped's unit as the PICU is still being built apparently. I will say last night was a LONG night in which we were reporting a medication overdose issue with the charge nurse. Apparently our night nurse gave Noah an entire packet of anti-diarrheal instead of a 1/3 of the medication. Thank goodness Shane knew something was wrong with the consistency and very diplomatically (thank goodness it was him and not me!) took care of it. I was glad to know an incident report was filed and there will be follow-up. They should take this very, very seriously.

Anyways, so hopefully Mr. Jonah will be coming home with some antibiotics tomorrow. He is eating well. He is still coughing up mucus in the morning which makes me think he might have something in way of a nasty cold (hopefully not pneumonia) but tomorrow's x-ray will show more.

Thanks everyone for your concern. We'll keep the blog posted.

Sunday, March 22, 2009

When it rains it pours, literally.

Poor Grandpa today was on the way to the hospital when someone stopped suddenly in front of him and when he hit the brakes our Toyota Corrolla skidded in to the Jeep in front of him. Needless to say our car is not much short of a pile of parts right now. We just got back from the Toyota dealership and we are having to buy a car much sooner then planned (our Corrolla was paid off) but we did need a larger family vehicle. Plus, most importantly, my dad is fine and was not hurt. We are watching him to make sure he doesn't start up with pain and my sister talked him in to visiting a chiropractor.

There is a silver lining, Noah is coming home tomorrow! We still don't know what caused him to be so sick but a nurse today did mention that there is a new flu strain circulating (I complained that everyone in our family had the flu shot this season).

Jonah will be home (hopefully) Tuesday as long as his blood work shows everything is returning to normal. He will be on oral antibiotics for the remainder of the week.

Thanks everyone for your prayers, keep it up. We thank everyone for their kind emails and for all your support.

Saturday, March 21, 2009

Both boys are still in the hospital. Noah's blood work came back showing absolutely nothing. Talk about frustrating. I wish we had some idea what in the world caused that little man to be so incredibly ill and then for us to also get so sick. Right now we have no answers but they also did some culture work so we'll see if that grows anything. Right now they are just suspecting some type of virus got in to his system.

Jonah's blood work, on the other hand, came back showing a nasty bacteria infection. They also drew blood today for culture purposes and hopefully Monday we'll have an idea what made him so ill. Because of his shunt, the big worry with Jonah is Meningitis. He has to stay in the hospital until they know for sure his infection is clearing before they will send him home. He started antibiotics today. Noah is doing better today, he is being impossible to feed. I think the insecurity of the surroundings as well as still getting over this nasty bug and bringing in two molars at once has set him off big time. But to get him home he has to eat, so every four hours we have been syringe feeding food in to him. He fights it and it is all behavioral related. I keep praying he will be released tomorrow (Sunday) but I am not sure as tonight he had another runny stool and the doctor wants normal stools before he leaves. They have him on meds to stop the diarrhea and it is not as frequent but his stools are still runny messes and not what it should normally be (man, who knew I would talk so much about poop!)

Back to the boys diagnoses' or lack thereof, in other words, both boys have two separate things. How in the world does that happen? Two boys with two different problems.

I do feel better today (thank goodness). Shane still suffers from headaches and general nausea. He went home today to rest and came back about 8:00 PM. I got away for dinner and a shower and I am headed back to spend the night. Tomorrow we'll really have to start splitting the days as Shane will have to go back to work on Monday.

Noah has had it with being cooped up in a small crib. He is managing to get to all the cords on the walls, even the monitor cards near his crib and I feel like we are constantly chasing him while trying to comfort Jonah from all the scary, unknown surroundings which he does not understand because of his poor vision. He really is so sensitive. Right now even the sound of something moving in the room can send him in to hysterics.

I so wanted to come home and just take a breather tonight but leaving anyone alone at night with those two is just too much to ask. Noah wakes up several times and wants to be held throughout the night and it doesn't help that the only thing that reaches his bed is the uncomfortable pull out chair.

Well, we will get through this. We will.

To all of you who are praying for us and wanting to know what to do....just keep praying. That is the best thing that anyone can do.

I'm also sending a shout out to Shane because we had our 4th anniversary this past Thursday, the day Noah was admitted. Happy 4th honey. The punches keep rolling and we are still hanging in there.

Until tomorrow.

Friday, March 20, 2009

Jonah joined Noah this morning in the hospital. Unfortunately both Shane and I are very ill ourselves. We've had to manage. Shane went home today to rest and my dad was the one to take Jonah in to the doctor's and then admit him to Memorial (next door to our ped's office). I am finally home to get some rest.

I really think the boys caught the Rotovirus. We have horrible flu like symptoms ourselves and are hoping this passes soon. It's tough to manage two little ones who hate hospitals when you feel run down yourselves.

Thank the good Lord my father is here helping. God bless family.

Thursday, March 19, 2009

Just a quick posting. Noah was admitted to Memorial Hospital today. We are home grabbing clothes and running over to the hospital. Overnight things did not stabilize and when weighed this morning, Noah had lost several ounces.

I keep praying this will only be for about 12 hours to get his diarrhea under control and get him some fluids. I hope it won't be longer then 1-2 days.

Thanks everyone for your prayers.

Just a quick posting. Noah was admitted to Memorial Hospital today. We are home grabbing clothes and running over to the hospital. Overnight things did not stabilize and when weighed this morning, Noah had lost several ounces. His blood work does not show anything alarming so we do think it is viral.

I keep praying this will only be for about 12 hours to get his diarrhea under control and get him some fluids. I hope it won't be longer then 1-2 days.

Thanks everyone for your prayers.


Wednesday, March 18, 2009

Unfortunately we have added runny diapers to the smelly mess we have been managing today. Noah did ok this afternoon and took a nap with mommy. He did manage to throw up one bottle but we were able to get another down with no problems. Tonight, however, things started back up and we are having a hard time keeping things down plus we have added a very smelly course of diarrhea to the mix.

Keep us in your prayers. Shane and my dad are planning to give Noah a priesthood blessing and first thing tomorrow we are back to the doctor's to check for dehydration and decide what to do next. We did not get a call back from the ped's office today about lab results (pretty annoyed about that) so I guess we'll hear in the morning.

Until then.
Just a quick posting. It always seems when things are going smoothly someone gets sick. I'm pretty sure this is universal in most homes.

This morning Noah woke up and the first thing he did was vomit a bunch of mucus. We thought it was related to teething. In a rush we were off to first thing in the morning appts with physical therapy. Noah managed to throw up his entire bottle on Grandpa and himself while Jonah was being worked with. That followed with several gagging sessions, more vomiting and by 10:00 he had thrown up at least 6-7 times. No fever, sats were fine, just lots of gagging and throwing up. I started to panic and called our pediatrician. Of course they wanted Noah in asap.

We met with them about 11:30 and the doctor did not find anything wrong with ears, nose, he had a soft belly, nothing alarming there but the fact that the throwing up was so frequent she ordered lab work. We just finished with this and we are on a strict feeding diet today, 1 tsp. of formula every 15 minutes. They want fluid to be absorbed before his body can loose it and hopefully the smaller volume will keep it down.

I just gave him his first 5 ml's of Kids Essentials and he is due in another few minutes for the next dose. He did want more but he has been coughing now so I am glad I didn't give in and give him the extra fluid.

We hope the blood work comes back showing maybe something viral that will pass and not anything serious. We definitely do not want the hospital involved so if you are able to say a prayer today say one for Noah that he can beat this bug and not end up dehydrated and back in the hospital.

Stay tuned......

Tuesday, March 17, 2009

Jonah playing in his Johnny Jumper. We've modified it a bit and hung light sticks instead of the other toys as well as position his favorite light wand in front of him. He loves to chew on his slinky and we help out his vision by surrounding him as much as possible with his black tri-fold and blanket so he can concentrate on his toys. It's a great work out for those legs and trunk too!

This is something I have NOT taught my son to do...for some reason Noah does not like clothes lately.
A boy and his sword....
It has been a few days since my last update on the boys. Last week was very hectic and busy but we made it to the weekend. We managed to paint the entire backyard fence, weed the flower beds and plant new flowers plus lay down mulch. Wow, it was crazy. I also managed to clean my entire house (for the first time in probably too many months) because we held a St. Patrick's Day dinner at our home on Sunday. It was fun to have over friends and cook traditional Irish food! We even played a fun quiz and the winner (the Hansons) took home a floral centerpiece we arranged just for the occasion.

In way of the boys, things are marching along. Last week's feeding session was interesting. I do think this therapist knows her theories and is well studied but I had a hard time understanding why she kept insisting on giving food to Noah when she knows he has an oral aversion and HELLO, whenever you try to get him to take food from you (especially finger food) he absolutely refuses it...even if he wants it. If you set it down on his tray and turn your back you will find he has managed to eat it without you looking (he is our little controller). Anyways, needless to say Noah did NOT behave and refused everything she gave him plus was cranky for most of the session. He wanted down and wanted to play NOT eat. So hopefully this week goes better. Jonah ate most of what she gave them and we are actually graduating to some Stage 3 foods. Mostly veggies, fruit mixes and some dinners but we still have to mash up the really big chunks of food....but still, it is progress! Noah LOVES his peach star puffs and gobbles them down (I can hardly believe it). Pretty much everything else he plays with or throws on the floor. Jonah is curious but still not sure about the textures of finger foods, I am sure not being able to see things well is making it a bit more difficult for him.

Yesterday we saw the GI Clinic in Fresno. I thought they would not be happy with Noah's slow weight gain but the PA we saw thought he looked fine and said his growth has been slow but steady so she wasn't too worried. Jonah, of course, is doing fine. Noah weighed in at 19 pounds 7 ounces and Jonah 20 pounds 10 ounces. Both were around 29 inches (which I find interesting as the ped's office said Jonah weighed more and Noah less and that Noah was only a bit over 28 inches, however I think the GI Clinic's measuring methods are more accurate). So it was a quick visit. My dad was saying how crazy it is to travel over 4 hours round trip for a 1/2 hour visit with the doctor. Yup, I could not agree more. Come on Bakersfield, you need to get a children's hospital!

Today I called Duke University again. I don't know if anyone remembers my post about possible stem cell treatments for Jonah several months ago but with the new changes made by the Obama administration researchers are now able to pursue all areas of stem cell research. This just might open up possibilities for us. It is still a tough discussion for us but realistically with how difficult our pregnancy was with the boys I don't anticipate we will use our remaining three embryos. Our only other options right now would be to donate them eventually to a infertility bank. With my family history of cancer I doubt anyone would adopt our embryos and thus that doesn't leave us with many options. I do believe in our situation it would best serve our family to use these embryos to possibly change the course of Jonah's outcome. Stem cell research is nothing short of a miracle from God. I believe in the hand of providence when it comes to new research and science. I don't separate the two and I believe God has made this available to us at this time to create many, many possibilities for recovery in what were once hopeless cases.

I don't know if we are yet eligible for treatment. The woman I spoke with was more of a administrator so she was only able to give me the basics of what they are doing. She did take all our information, including everything regarding Jonah's current diagnosis' and premature birth. She did say researchers are in a better position to pursue stem cell treatments with the new reversal by President Obama. She again mentioned that likely Jonah would be required to undergo chemo so his body would accept the stem cells as anything that is not an exact match (i.e. cord blood saved from birth) is considered foreign and less likely to take so chemo gives a higher chance at success. She said the concern there is the nature of chemo and it's affects with children under 7. So I really don't know where things stand as she said she would be calling tomorrow with more information and that at least we would be entered in to a database where eventually we would be contacted about possibilities (but she did say that could be some time).

So I really don't know if I should even be too hopeful but all I can do is continue to research, pursue and pray for direction. I just feel a draw to this option and I don't feel I should give up on the possibility.

Jonah is continuing to be our chatter box. I think I mentioned in a prior posting that their new feeding therapist is pleasantly surprised at Jonah's verbal nature (yeah!) He is nothing but giggles and smiles. I truly don't know if I have seen a happier baby. He is generally extremely happy, aside from poopy diapers, being hungry and sudden unknown sounds that he does not understand (and normal babies have a hard time with this too) he is always smiling from ear to ear and chatting away. I am so grateful for his happy nature as he has what people in marketing/sales call a "win-win" attitude about life and that can only help him try to do everything he can. He is one determined, happy child.

Noah is climbing our stairs all the way to the top and is getting ever closer to walking. We are working on walking with push carts at physical therapy. At any time this little man will be up and walking and chasing after life. Noah continues to be our very vocal and very dramatic boy. He is in to everything, wants everything and demands attention at any given time. We are trying to discipline and help him realize he does, imagine this, have a brother who also has needs. Hopefully something will click soon.

I do have to say that the funnest part of everything is watching the two boys interact. Noah always giggles if he sees Jonah laughing and if Jonah is in his discovery center Noah immediately crawls over, climbs up and starts playing with his brother....both of them chatting away at each other. It is wonderful to see these two and I hope and pray that their relationship will grow stronger as they get older. I know Noah will be a protective, loving brother and will be Jonah's watch guard.

So I hear back from Duke University some time tomorrow and I will post what they have to say, even if that is only that we will be entered in their database for future contact. At least it is a possible step in a good direction.
We had to post a special congratulations to Nurse Heather Keller. Today she had her first baby girl who weighed in at a bit over 5 pounds. We saw some adorable photos which she sent us via text after calling to say she endured 18 hours of labor (no meds mind you!) She truly sounded so happy.

We love you Heather! You were such a wonderful nurse and took such loving care of our boys and you will be an amazing Mother too!

The Hanna Family

Sunday, March 15, 2009

I am prompted tonight to include a very special poem about my beautiful son Jonah. I think sometimes it may be more difficult for others to see all the special things he does and the amazing progress he has made. How easy it is to measure children by what is considered normal.

Mother of A "Special" Child

When I was young, I'd often say, I'd like to be a mom someday

While playing with my baby doll, I thought that jobs not hard at all

I'd have a baby, maybe two, a girl in pink...a boy in blue

Well I grew up and sure enough,

The baby that was sent to me, was born with disabilities

At first I'm frightened through and through, there's much to learn to care for you

This wasn't in my plans at all, when I was young and played with dolls

Your mind and body were so weak, you might not ever walk or speak

So much special care required, I'm often scared and often tired

As months and years go slowly by, I smile a lot but sometimes cry

Oh, how I'd hold you and I'd pray, that you'd be healed and whole someday

But I knew that was not to be, not physically or mentally

Then one day I realized, a I gazed into your loving eyes

That I had learned so much from you, determination...courage too

A love so unconditional, it floods my soul and always will

I'm proud to say I gave you birth, for you're an angel here on earth.

Monday, March 9, 2009

Aren't these just precious? We got the boys' ties today in the mail from Children's Place. The boys are going to look so cute in their ties for church!

Sunday, March 8, 2009

Noah's pulmonology appointment went fine. Nothing new to report. They actually took Noah completely off oxygen for a few minutes and then monitored him to see if he was ready to be without during the day. Of course I knew he was not ready as he is still on 1/2 liter (not sure what the doctor was thinking) and sure enough he was only satting about 85/86. So he is still not ready to be oxygen free but maybe soon. I plan to call this week and see if we can't get him a back pack for church so that we won't have to lug around one of his tanks. Hopefully we can figure out something more compact that will last for 3 hours when we take him out on Sundays.

I have been shopping for the boys for church clothes and it has been fun! We went to the Tulare outlets after the Fresno appt on Saturday. I found some adorable shoes, sweater vests for Easter and cute Baby Gap pants. Of course Noah's size was out in the pants and in the dress shirts we found. So in one week I have to call back and see if they've had a new shipment. Bless Noah, we have got to fatten this boy up!

Speaking of, Noah weighed in a bit over 19 pounds Saturday and almost 28.5 inches long. He is still pretty small but on an upward growth scale so his doctors aren't fussing as he does make progress, just slowly.

Saturday was busy, after getting home I jumped in to help take over for Shane who was painting our fence. Shane left for a ward activity and I then quit to eat a quick dinner with my family and then go to the church activity also. After the activity we went with friends to a local creamery (yummy) and then home. I then rushed to Albertsons for groceries and with daylight savings made it to bed at midnight. Shane offered to take my mom to the airport as I picked her up so he went to bed as soon as we got home. It was a long but good day.

Another activity we are excited for is the Beeper Egg Hunt through Blind Babies Foundation. We have been invited to attend the activity first of April. Instead of a regular egg hunt the eggs have beepers so the visually impaired children can locate them. It should be a lot of fun and Noah gets to go too so we are excited!
I think this photo says it all: teething is hell. Even that isn't sufficient enough to describe all these little ones go through. Jonah is bringing in his first molar and it has been absolute misery. Tonight alone we have spent over an hour trying to console him.
We've added a new toy to help Jonah bear weight on his legs and hopefully increase his leg and upper body strength. At times he is happy to play in this bouncer but other times, not so much. It is great though to see him use his legs more while playing.

Photos of Noah with Grandma and Grandpa Langston. My father's sister, Aunt Wonnie, gave Noah the cute soccer outfit he is wearing in this photo. We have such a great family. Our Aunt Rachel recently sent us the sweetest card with a gift for the boys. Thanks everyone for thinking of us!

Thursday, March 5, 2009

Our appointment was nothing new on Tuesday at CHLA. The cranial surgeon we met with confirmed that another helmet would not be helpful and that surgery at this point would be too risky. He did say that once Jonah's head growth stops (by age 5-8 usually) we could do a procedure that is less invasive where they inject bone filling underneath the scalp to fill in the areas of the head that need shaping. I think Shane and I feel by then Jonah's full head of hair will help matters and a surgery of such nature will not be necessary.

We also met with our new feeding therapist through Affiliated Speech on Wednesday. She has her own take on feeding but I did like her. She is more in to using real food with the boys which is ok with me as that is obviously the eventual goal that they be comfortable enough to eat table food. However, she isn't much in to the NUK brushing, etc. which I still think is too helpful for Jonah to stop. She wants to see the boys once a week on Wednesdays. Just another appointment to add to our schedule. =) I think right now the only day without 1-2 appointments is Thursday. Although hectic I try to take the perspective that at least my days are full and I am getting out of the house.

Tomorrow our infant specialist comes at 8:15 and then we are off to PT.

My dad and I are attempting to stain our back fence while my Mom is here to help. I am trying to get in big projects before my dad leaves in April. My two-person job will become one and big projects will be out the door.

My good father today looked at me and very sadly said, "What will I do when I have to leave these boys and go home?" We will miss him but he has already promised to return come June to help again which we are so grateful for.

We found out neither our insurance nor Kern Regional will help pay for the costs of the Wingbo. Christi with Blind Babies agreed to let us keep hers for one more month and hopefully by that time we'll have found one on Ebay or Amazon.

We are soon switching the boys to Kid Essentials, a special high calorie formula. It has about 45 calories an ounce. We will officially be off infant formula and Benecalorie and hopefully the boys will enjoy the vanilla and strawberry flavors of this new formula. Pediasure does not have enough calories nor does skim milk. We did our research and found that for the price of Pediasure and Benecalorie we could get more Kid Essentials (although don't get me wrong, Kids Essentials is no bargain). I also liked the idea of the Kid Essentials already having the calories as the Benecalorie sets up and is very oil like in texture.

Saturday we have Noah's Pulmonology Clinic. They were holding a one time Saturday clinic and it was either that or wait until May which was too far out for a check up. The good news will be that Noah has weaned down to the 1/2 liter during the day which his Pulmonologist wanted when we last met. I am still sad he is not completely off as I was looking forward to going to church without the oxygen in tow but at least he is getting there.

I just looked at our clock and it is already past 10 o'clock. Time to get some rest! I will update our blog this weekend. God bless.

Sunday, March 1, 2009

I have been meaning to post an update on what is going on with the boys.

A vision specialist from the school district came and met with Jonah on Thursday. After an hour of observing and talking to us his conclusion was positive but I was left frustrated. He basically said all we are doing for Jonah is working and that he is responding to his environment and showing curiosity plus his chattering (verbal) skills really excited him. However, he gave a few extra tips and confirmed those we had already been told by others and told us he would see Jonah once a month to check on him.

So what about an actual therapy plan? How do we know what we are working toward with goals and a plan in place? I am just frustrated. He definitely knew his stuff (his daughter is completely blind, a former 24 weeker herself) but he said his case load through the school is 50 and he can only do monthly check-ins with his new assignees.

So all in all, his observations were encouraging but what now?

I don't think we have the budget nor time to travel the four hour trip to get Jonah in with the Blind Babies specialist in Fresno. We could only manage twice a month and right now we just added a brand new speech/feeding therapist in our area plus now Noah is in OT with Jonah twice a week and our school district teacher comes once a week to work with the boys.

Where is the time?

Tuesday we go to CHLA (Childrens Los Angeles) for Jonah. We are getting a second opinion at the Plastic Surgery department regarding his head shape. I have no idea what to expect. For all I know they will confirm that Jonah is too old to do anything more. I think I might feel a bit devastated if they do, kind of like I failed. My worse fear is they won't like what the local orthotist did and I'll feel guilty because I wasn't able to get Jonah to LA for his helmet.

So we'll see how it goes.

Noah has officially hit his two's (in my book). He is fussy non-stop, always wants the attention, screams, yells, throws toys, you name it. He definitely is enjoying exerting his free will and independence much to our distress. In the same breath, we are grateful he is achieving milestones. He has started pushing a box on the floor and taking steps, he is very close to walking we are just waiting for that moment to finally arrive.

Jonah is generally our even tempered baby. He does have his insecure moments, mostly due to his vision issues. He gets very worried or insecure if something loud happens near him that he cannot understand and will cry, aside from that his crying spells are mostly due to hunger or dirty diapers. Not bad for the little guy. He mostly chatters all day long and mostly wakes up to chatter first thing in the morning. I would say he is our mellow baby, at least for now.

One thing I am worried about is the increase in Jonah's vomiting. He is going through almost daily vomits. His episodes always have us on edge because he shuts down due to the throwing up through his nose and it is stop and go breathing until the episode passes. Tomorrow I am calling the GI Clinic and asking about needing to change his meds. They have not been reviewed and/or changed in about 4-5 months. It might be time. That would be great if this were the answer.

Our new insurance is having us go through a speech therapy center here in town for speech and feeding evaluations/therapy. So we are starting all over again this week with a new therapist. I haven't heard that great of things about the local feeding therapy so we'll see what I think over the next month or two. Eventually we may have to just break down and head to Los Angeles for a serious feeding clinic.

Our pediatrician recommended this week that if we take the boys out to church, etc. come April we not put them in with the other kids in nursery until May. She said this season in Bakersfield has been nasty with flu and RSV so she wanted us to wait until May before they really started being around groups of children. We can still take them out to church though so it will be nice to finally start going as a family, even with all the new challenges and questions that will come with being out and about with others.

We will keep you posted and let you know how Tuesday and Wednesday go with CHLA and our new feeding therapist.

Oh, I forgot to mention our trials with getting Jonah to leave his glasses on. He constantly takes them off and bangs them on everything. They already look like they have been through war. Thank goodness we had a one time replacement warranty so we ordered new lenses and an extra coating of anti-scratch. Plus this time around I am getting a head band to keep those glasses on his face, no matter how much he pulls at them. We'll let you know what works!