Denied!!!

Unfortunately we found out today that they would not cover the pediasure for Sophia. Her GI doctor is appealing it but it doesn't look too promising. I know God can provide this need, so please pray that He does. We have the swallowing specialist coming in the morning. I am looking forward to seeing if there is something there that could be instigating this whole failure to thrive thing. We also have a weight check tomorrow. I am praying that we have hit 18lbs again.
Sam continues to complain intermittently about not feeling well. I feel like as the days go on and we get farther out from the last IVIG that I am getting more anxious each day. I feel like we are just waiting for something to hit the fan. And now with this whole crazy swine flu I am really anxious about it. I know that God is in control but I am struggling to rely fully on Him right now.

Playdate with friends

Today we went to my friend Myriah's house, Sam loves playing with her son Owen, and her daughter Lillian. There were three mom's and seven kids. The kids had a blast as it was in the 80s today. Sophia got covered in dirt, and splashed in the water for a long time. Sam also loved the water but wanted to make "mud milk"

The love of siblings

Remember this from last year?


What a difference a year can make:-)

Outdoor play

The weather is gorgeous and so today we were outside playing and enjoying the beautiful sunshine. Sophia is becoming really independant and wants to do so much by herself. Sam is just like his daddy and you can't get him outside enough. He is so determined and persistant. He continues to complain on an almost daily basis that he is "so sick" but most often he can't tell me what he is feeling except that he is so sick. My heart just breaks for him, I can't help him and I can't fix it. I just try to love him through. But a two year old shouldn't have to have "mommy I am so sick", "mommy I don't feel very good" as a part of his almost daily language. Poor little guy. Please pray for him.

GI update

Sophia and I went and saw the GI doctor today. He was not happy with her weight and she actually is down 7 ounces again:-( Aggghh! She weighed 17lb 7oz. He started her on a medication that they give to anorexic people that is supposed to stimulate her appetite. We should be able to get it from the pharmacy tomorrow I think. He also wants to increase her pediasure to 2 cans a day. I am just praying that the insurance will cover it because we truly can't afford to pay for it.
Her OT came today and has now recommended that we do a barium swallow so that is in our future too. We will have a swallowing specialist come next week to evaluate her whole swallowing process. I wonder if that will tell us anything????
Auntie Chantal got this little onesie for her when she was born thinking it would fit her LAST YEAR!!!! And she has adjusted to the new carseat and loves it as you can see

GI tomorrow

Well it is starting to look like they are really questioning Sophia's muscle strength in her mouth as well as maybe the actual structure of her mouth. We are awaiting the schedule of some new testing they want to do. They are hoping to get her in next week. ALWAYS something it would seem. She actually has gained some weight which I am thrilled about, however the problem is her eating has gotten worse, she is actually nursing more again. I am not sure what I should do with her, being Failure to Thrive and all, do I just nurse her because she wants and is willing to, or do I force her to eat? I wish there was a book that would tell me exactly what I could do to help her grow. WE go see the GI doc at Children's tomorrow and will find out other testing that they want to do besides the barium ones.
Sam continues to complain intermittently that he is "very sick", he actually was complaining yesterday of stomachache, but today has been more generalized again. Had a low grade temp and didn't really eat well today. He is so cute though, was asking to go to Children's Hospital to "make me feel better" Isn't that crazy? He actually seems to understand that the IVIG actually helps him even though he is only 2.5yrs.
In other news, I entered both of the kids in the Parents Magazine Cover photo contest. They would end up being on the front cover if they won,and then there would be a ten thousand dollar monetary reward. There are thousands of entries but if you would like to vote for us we would love it...
Samuel: http://www.parents.com/photos/photo-contests-1/cover-kid-1/725300088/
Sophia: http://www.parents.com/photos/phot-contests-1/cover-kid/710300006/
You can vote for both as they are in two different age categories, and I think you can vote more than once. Thanks so much. These are some of the pics that I used for the contest....

Craziness

What a few days it has been! We have had lots of fun, but been so busy. Between birthday parties, getting stuck in the mud, broken cars etc. Phew!!! Saturday Matt took the kids to give me some time to myself. So I decided to go to Wal-Mart. I got my stuff, came outside stuck the key inside the door and I heard this cracking noise. With a sinking heart I realized that I had just busted the car key in the door!!! I couldn't even begin to think how upset MAtt would be, and was dreading telling him. I did, and initially he wasn't happy. But by the time he got home he grabbed me in his arms and said that I was still his wife and his bride, and that he loved me! Phew!!! He and his father were able to fix the car too.
The kids are doing ok. Sam feels like crap I think, and has been quite whiny and miserable off and on. Today he said "mommy I am so sick." To which I replied "Why Sammy what;s wrong/" And he said "Everything hurts." Poor kid, what do I do for that? It is a few more weeks before they test his IgG levels, but if he is already starting to feel crummy....
Sophia seems to be messing with her ears again:-( Hopefully it is nothing. We see the doctor on tuesday for a follow up anyway. We will also see the GI doctor on thursday. Not to mention appointments we have on monday and friday too. Busy week.

Sammy update

Hmm, totally baffled with my little guy. He had a horrible night last night. Had to use the albuterol more than every 4 hrs. He was coughing almost continuously. The med didn't seem to help him as much either. I gave him the albuterol around 4am and until five he was doing horribly, but then at five he started to do better and was able to finally sleep.
I had a class today so was gone all day. But in talking with Matt this evening before they came home realized that he had been doing the med frequently too. I got anxious but unfortuntately the doctors office was already closed. I of course didn't want to bring him to the ER with the risk of germs and all. So I called pedi and asked if I could bring him up for them to check his oxygen level and stuff. The O2 level was good, but they thought that they heard some coarse sounds! Agghh, no fever no mucous or anything else. Hmm, then went and had one more pedi nurse listen because I didn't hear any coarse sounds, and either did she. Phew!! But all that to say who knows what is goin on with him and I will most certainly be making a trip to the doctor office first thing in the AM, as long as we don't end up in the ER during the night. Say some prayers please!!!

?Low tone with Failure to thrive

Any one out there who has become aware of this blog becuase of Sophia and her failure to thrive: Have you had a diagnosis of Low tone for a reason for the FTT? We had an occupational therapist come out two weeks ago that questioned whether we are having such a difficult time feeding her because of some type of low tone in her mouth/tongue. She gave me several ideas to try, and then came back today with a whole new bag of ideas and tricks to try. Now she is wondering if there is a strenght issue, whether or not her tongue, jaw etc is strong enough to chew the food and move it side to side and swallow it normally. I find all of this truly interesting because no one has really questioned anything like this before, and everyone has kind of thrown their hands up in the air and been like we just don't know... So anyways after she watched Sophia again today she felt that it probably isn't a low tone issue, as she is not drooling alot nor does she have her mouth hanging open or anything similiar
So now she is recommending some type of swallow eval or something along that line. Or at least to have someone come and watch her chew and swallow that specializes in that type of thing to determine whether it is a tone issue or a strength issue. Oh joy! More doctors and testing...
In other news we started the albuterol for Sam yesterday and have been having to give it to him every four hours. Not sure why seeing how he is supposedly not allergic to anything that is blossoming right now but we shall see. He has been very quiet and mellow these last few days, I feel like all of this bronchospasm is sapping his energy. We aren't to our "bad week" yet, and I can only imagine how that will be next week. So prayerfully things will get better and not worse. We don't go back to immunology for another two weeks. Scared to know what his IgG levels are, but also scared not to know. I wonder when this gets easier?

Easter 2009

My beautiful girl applauding herself for sitting on the stage like a big girl


I know I am partial, but could these two
possibly be any cuter?




Dasanee and Sophia: Meme's girls


All of the Moore Family Grandkids

My brother and sisters (we miss you DJ, wish you were here with us!)


Playing Games with Meme'

The egg hunt...


What a day! We celebrated the resurrection of our Lord today by going to church and then to Matt's aunts and then my mom's. Did I mention it was a busy day!!!! The kids are exhausted. Sam hasn't been sleeping well, am thinking he is having some type of bronchospasm but am not sure why. Has never had any type of asthmatic type symptoms or any respiratory illnesses other than colds. But he has been having these coughing fits, spells of difficulty catching his breath for a couple of weeks now. Came to a head last night with significant difficulty breathing. Anyways we will have to get that evaluated this week.
Church was great, large crowds, very busy but wonderful. Then to MAtt's aunt and uncles for a wonderful meal, the kids were kind of difficult to contain but did ok. Then on to mom's for the easter egg hunt and dessert. She also played games with the kids which is so fun for them.

Playground fun

Our first trip to the playground this year. The kids had a blast and got completely filthy. We had a nice picnic with our friends...