We had one...and then...

Well...I got a call yesterday from the administrator from the health department telling me they had a shot for Caleb and he could get the vaccine today or next week depending on when it was convenient to be administered. Then as quick as we had a vaccine for Caleb it was gone...you see. the gentleman didn't realize Caleb was three (not like we hadn't discussed his age in previous conversations) and the vaccine he had was for 4 year olds or older....AMAZING. So there is supposed to be a H1N1 clinic next week, the one he wanted us to take Caleb to originally, and he is hoping that he will get a vaccine next week for Caleb that can be administered, however he is not expecting us to go to the clinic now to get it administered....

Thanks to all for your continued efforts to try to get Caleb a vaccine. You all continue to be so awesome to our family! I hope we can get him vaccinated soon as this virus is running rampant in our town, just like the rest of the country.

Everyone please stay healthy!

God Bless you all!!

God Bless Caleb!!

H1N1 shot update

So I just got a call back from the guy at WV Immunization Complaint Hotline, and he said that he may be able to get a vaccine for Caleb by the end of this week early next....please pray!

God Bless you all!!

God Bless Caleb!!

Does it really have to be this hard...

So I am sitting here tears as I am typing this...I am so mad and so frustrated...I have been trying to get Caleb a H1N1 vaccine for weeks now and it's just not happening.

I wrote Shepard Smith with Fox news this will give you an idea of what has gone on:


Dear Shep,

I know you are a busy man, but I am writing you to see if you can help in any way. My son was born with two very rare syndromes, CHARGE and DiGeorge. The Charge effected his brain, heart, hips, ears (deafness), etc and the DiGeorge effected his immune system (this syndrome is one in which the child is born without the part of the body that creates the immune system). There is one place in the world that does an experimental transplant that after it grafts (which can take up to two years) will provide the child with an immune system. Our son spent two years straight in the hospital and we almost lost him a couple times. He is now three and he, myself, and my husband are a family again AT HOME. Caleb still has to live in complete isolation in our home, until his blood work shows his immune system is working. He is like the 'bubble boy'.



So his doctors at Duke suggested he get vaccinated to the H1N1 vaccine as he is in the 'high risk' category. I called our local health department weeks before to get him on the 'list' and the secretary said their was not such list and to just call back. I continually called back and got the same story. One of the mornings that I called I later got on our local news station's website and saw a news story saying that the local health department was scheduling the first immunization clinic. I then called back the health department and asked to speak with the administrator. He at first seemed like he was going to help me and send a shot to our local pediatrician so Caleb wouldn't have to go to one of those mass clinics. He then send he would send her paperwork and I should hear from the pediatrician next. Well after not hearing from the pediatrician, as I know they wanted to get him vaccinated as much as I do, I called them. They indicated they did not get any paperwork. By this time many schools in the area are holding mass clinics for children without pre-existing health conditions. Please don't get me wrong, I think it is great that other kiddos are getting vaccinated, just don't understand why my son who is in one of those '5 high risk groups' is not a priority. I called the health department administrator back today and he was nothing but rude to me, quite different from our previous conversations. He said he didn't send paperwork to the pediatrician, that she would have to enroll to be able to administer the shots then her application would have to be reviewed by the state. I then said that seemed like it may take too long and asked if I could just bring him down to the HD to get him vaccinated (which is not the safest of options) so he could get the shot. He then said after he took a bite of something and started eating on the phone, that I could bring him to a mass clinic for his age group at the health department. I asked 'could I bring him a little early to avoid the crowd' He said 'you can come early to get in line early' I was shocked at the lack of emotion. I called the WV Immunization complaint hotline and the individual I spoke with said that he was aware that after calling the HD (after getting another complaint similar to mine) that the HD explained that they were vaccinating some kids in schools because of breakouts. I totally understand that reasoning, but my son and a couple others fall withing CDC's guidelines....when did local authorities have the right to change government guidelines? Why am I fighting so hard to get my child, who should have been vaccinated first to get a vaccine. I couldn't even take my son to one of those mass clinics as the nasal form of the vaccine would be present and he cannot be around that. I am just at my wits end. I am scared. We almost lost our son to a very serious lung infection (another fact that the local health department is aware of) and the shot is there, yet I can't get him vaccinated safely?!? I have know become aware of other families in the area who have family members who are in the 'high risk' category too and can't get their family member vaccinated.
If you can help in any way I would so appreciate it

So I just got off the phone with the WV Immunization Complaint Hotline and so far nothing promising coming out of that either...

God Bless you all!!

God Bless Caleb!!

Please Pray for this Little Boy Alex and His Family

Hello everyone. I got an email from my friend Jen and one of her co-workers family members sent her an email with the following:

All – I am writing this morning to ask for your prayers. My niece Amy & her husband Eric have two children, Alex (4) and Abby (21mo). Alex was complaining on Monday that his neck hurt & was walking a bit funny. However, after dinner Monday, he went outside to play in the yard with the kids in the next door. During the night he was up a lot complaining how his neck hurt & he spiked a fever. My niece got dressed for work Tuesday, but took him to the pediatrician to see if it was an ear infection or something. They sent her to the hospital with Alex. Children’s began to run all kind of tests on him. A few hours after being at the hospital, Alex lost all feeling and motion from his chest down. They ran all kind of tests on him eliminating, meningitis, h1n1, guillain-barre syndrome. Finally close to 7pm they came in and told my niece & Eric that he had a mass in his spinal cord & needed immediate surgery. My sister & brother-in-law were at the hospital at this time & the neurosurgeon explained the procedure and that Alex had a lot of bleeding in the spinal cord. The way he explained it to them, Eric asked “are you telling us this is life or death?” The neurosurgeon responded “Yes”. After 3-4 hours of surgery Tuesday night, they determined Alex had a mass of blood vessels in his spine, removed them, put titanium clips in his spine & brought him to ICU. He was on a ventilator. The good news was that it wasn’t bleeding as bad as they thought & he survived the surgery. Wednesday, he was very heavily sedated but was able to blink with closed eyes & nod his head. He was given a feeding tube on Thursday & they tried to remove the ventilator after his oxygen levels increased. Thursday the pathology report came back & showed no tumor cells or cancer in the blood mass they removed. He showed signs of reflexes in his arms & toes. We thought he was making good progress, plus he was able to urinate which they weren’t sure he’d be able to do on his own. We knew he still had a long road ahead of him with therapy but were feeling better about his prognosis. Unfortunately, Friday afternoon they had to put the breathing tube back in because his oxygen levels fell. The reason I’m writing now is about 3:30 this morning he showed signs of complete paralyzation again and his fever spiked to 102. They performed another MRI because they were afraid the mass had returned. Thankfully the MRI was clean but did show excessive swelling. He has been heavily sedated and will be in ICU for a few more days. They still don’t know if he will ever have use of his arms or legs again, currently he has no reflexes at all. Nor do they know what caused this mass. They are testing for blood disorders and will be checking my niece and her husband.

Please add this sweet boy and his family on to any prayer list and keep him in your prayers! You can keep updated on his blog, https://www.carepages.com/carepages/ChuckandBear. You will need to become a 'member' of carepages if you are not already one. It is free, you just need to create a screen name and password. Thanks all for your prayers for this little boy and his family!

God Bless you all!!

God Bless Caleb!!

Growth Spurt?

Okay so yes I am going to post this....Is it a growth spurt or what?!?

So as you all know Caleb is our first child and we have delved into the world of eating (so we are trying to figure out how much a child of his age would typically eat)...A wonderful world! He is finally eating by mouth and now lets me know when he is hungry by signing eat. Of course, we started off slow but he now eats three meals a day with snacks in between and this is all based upon when he signs to me that he is hungry. Here is a sample of what he ate yesterday:

Breakfast: Bowl full of Oatmeal

Lunch: Toddler Tray with 3/4 cup of a pudding snack

Snack (hour after lunch): another pudding cup

Dinner: another Toddler tray

First snack: HUGE bowl of ice cream

Second snack: Two toddler fruit bars

He signed that he was still hungry after the second snack, but I thought that was more than enough for a child his age?!? Am I wrong? Yoi this kiddo can eat (LOVE saying that)!

He still cannot chew so we have to cut things up for him and we are working on the drinking. I did get him to take multiple gulps of apple juice yesterday and the day before, so hopefully this is a sign too that we are getting close to getting him to drink. We shall see!

God Bless you all!!

God Bless Caleb!!

Fives

So another thing we have been trying to get Caleb to do for months is to give fives (high fives). We have been working on this for awhile now and lastnight I asked him for 'fives' and he did it!! I wanted to cry! I asked for fives and he did it! Love you Caybay! Keep up the great work!

God Bless you all!!

God Bless Caleb!!

Two Blog Posts in One Day......

means its gotta be something good.

As you all know we have been working with Caleb on trying to get him to drink. We try at every meal and get around 5-6 sips in his mouth, which usually accounts for an ml or two. Well at dinner tonight he did great! We still hold the cup and put the spout in his mouth and tilt the cup. I figured out tonight if I gently put my hand on his forehead it somehow calms him to take the small amount that I pour into his mouth. I am so ecstatic to say he took a little over an ounce of apple juice tonight with dinner. AN OUNCE A FLIPPIN' OUNCE! WOOOO HOOO CALEB! This is the most fluid Caleb has EVER taken by mouth! WOOOHOOOOO!

God Bless you all!!

God Bless Caleb!!

Another Milestone

So, we have hit another milestone.

Because Caleb's IgG levels were in the normal range, we were given the O.K. by Dr. Markert for Caleb to start getting his vaccines. However, NO live vaccines, Chicken Pox and Hep A, can be given.

We were so excited that we hit this stage in his Immune System Development! So Tuesday we took Caleb to his Pediatricians office to get his first round of shots. He got his DT&P, PCV, HepB, Hib, Polio, and his flu shot. I felt bad for the nurse as she was so upset she had to give him four shots! He did great! Of course he was upset, but he was such a big boy. We were very excited to get him there to get his shots, but, at the same time were very nervous to take him out in public as we have heard of some possible H1N1 cases in the area. That vaccine isn't coming until mid October to early November. I wish we could get our hands on that vaccine ASAP. But we are trying to be patient. None of us can get the nasal form of the vaccine as it contains some of the live form of the virus in the vaccine. So we nervously wait for that vaccine to get to us so we can get Caleb and ourselves that shot so we can protect Caleb. So scary!

As far as his development.

• I love that I get to say this...but he eats sooooo much. I love saying that! He eats all three meals and snacks! We have dropped another feeding tube bolus out of his schedule as we are hoping that what he takes by mouth replaces the calories that he would have gotten by that bolus. We are still working on drinking. He seems to be a little more receptive to the sippy cup being placed in his mouth. So I hope that will come along like his eating did. It was so great this morning I went into his room to get him ready for the day and the first thing he did was sign 'eat'. He does that when he gets hungry during the day too! So awesome!


• Walking: well....not much going on here. He absolutely hates that walker that we got awhile ago. I was looking into the possibility of getting him a gate trainer walker. But his PT is not for the idea. I just do not know what to do regarding the walking. He can 'opt' out of the other walker by sitting and he doesn't want to hold your hands and walk either. The gate trainer style walker kind've braces them in so he can't opt out. I also think this would help him work on his balance. These walkers start around $1,000, so we are looking into other therapy ideas...open to any suggestions...


• I have been trying to get Caleb to draw and color for months! Every couple days I would take out the crayons and draw and then see if he would draw or color and no go. This routine went on for MONTHS! Then low and behold, last week he started to color! I wanted to scream! He loves crayons and his aquadoodle now. A couple days ago, he spent the whole day coloring! He is now at the point where he draws something and then signs to me what it is. Love it!


• He is pretty good with his colors. For example, if I ask him by signing 'where is the red lego?' He finds it and we do that for all his colors. We are working on counting and shapes. I am trying to find different ways daily to teach him these concepts.

Well that will do it for now! Have a great day!

God Bless you all!!

God Bless Caleb!!