Sophia Grace

The love between a brother and sister



She really is getting "into" everything

Bath time

Hair cut

I took Sammy to get a hair cut today. He was SSSSSOOO excited about this. It is amazing to hear the mind of a child and how excited they get about random things. It is a reminder to never take things for granted.
I worked last night and had quite the busy night, I came home and got to sleep for about two hours, hoping that maybe I would get to lay down again before work tonight. But no such luck. Oh well, at least tomorrow night I will get to sleep. Sleeplessness is a miserable way to live...
After dinner I was giving hte kids a bath and Sam got one of his weird rashes with scattered hives. It was instantanious. Perfectly fine and then splotchy everywhere. He started breathing quickly and getting itchy. The scary thing about this is who knows what it is caused from. There was no new soap, no new tub cleaner, NoTHING NEW!!!! I have heard that so many with the Immune system issues do this and that benadryl is a normal med for these kids, but I sure would like to know what causes it.

Hmmm....

No new news today. I didn't hear back from the doctor. I am very disappointed about that. Sophia ate slightly better today than yesterday. She ate some yogurt and some shredded cheese. She ate some life cereal and some sliced turkey. I would say we made some progress but with her it just depends on her mood and what she feels like. I think that that is what is so frustrating. She may love something today and then tomorrow won't touch it.
We had Early intervention today and that went well. Her PT was impressed with the gross and fine motor things she is now doing, namely finally crawling. She will be one year old next week and she just started crawling this week. She is so proud of herself too. She also mentioned that she will most likely no longer be coming to service Sophia. She advocated to get an OT in to help with the feeding issues, so I am really hopeful that we can figure this out with her.

Chronicles of feeding a Failure to Thrive Child

I can't even begin to explain how frustrated I am getting with Sophia's eating habits. I only got 4-5bites of food into her ALL DAY today!!! She just adamently refused anything and everything that I offered her. It doesn;t matter if the food is warm or cold, if it was pureed or chunky, if it was something she could take small lbite of, etc. Even if she loved something yesterday there is a very poor chance that she would even eat it again today. Some days it is about self feeding, and other days she wants to be fed, I just don't know anymore.
She actually physically mushes her mouth together and also whacks the food away or throws it. Lots of fun right? If anyone has any ideas I would love to have them.
Sam is doing well. He complained frequently about abdominal pain but seems to be doing fairly well.
I am still waiting for a call back from the GI doctor about Sam's allergy testing and some otehr blood tests they did, and also for Sophia what her plans are if things continue like they are.

Siblings

Got to love days when the kids are just laughing and squealing with delight with each other. I just love to hear them laugh. After having a crazy night at work last night and only getting around 2-3hrs of sleep today, it would be so easy to get angry and frustrated and short tempered with the kids. But they just were so darn cute and just brightened my day. Their laughter is contagious. Lord I thank you for these two, what a tremendous blessing they are to my life

Winter time fun

Matt snowblowed the yard the other day and made a hill for Sammy to sled on. He had an absolute blast. And then today it was nearly 60 degrees, so today Matt let him jump around in a puddle. I don't have pictures but just imagine all the snow we have had and it melting into a big giant muddy mess. Imagine the fun a two year old can have in that.... Oh well maybe another day we will get the pics of the mud.

Another day another doctor

Yesterday we went to see the kids primary. Sophia had a temp of 104.1 and was so fussy during the night. Sam went to see her due to his frequent falls and greatly increased sleeping over the last week or so. Sophia has a GI bug, and since she has been healthy the temp with her was more concerning. Sam the doctor isn't sure about and we will continue to watch him closely. In happy news Sophia is now 16lb8oz!!! She is finally gaining and gaining well.
Today I brought Sam to the allergist. He gave us the results for his urine and stool tests that he had done. The testing showed that Sam has extremely high levels of yeast, and so we are going to continue to treat that with Nystatin. He also is recommending dairy, gluten, and nut free diet for Sam. Although I have no idea how we will be able to make that happen. I am on the fence with this allergist as I know that there can be a high incidence of false positive allergy testing with the skin tests. We shall see...

A whole kaboodle of mixed emotions

Today we went and saw Sam's immunologist. We are moving forward with the plan to trial off of the gammaglobulin after this month. We will then watch his levels and see if they start to drop off or if he gets sick during the trial period we will reinstitute the treatment. I am so excited that we may be moving beyond this part of his life, but am so scared that if his immune system still isn't quite up to par then he will get really sick and I just can't stand to think of him being so sick again. I am so excited and scared to death at the same time. I know that God is in control but I just don't know what His perfect plan is for my little guy. Please pray that all is well with his immune system and that this is a chapter in our lives that we will be putting behind us.
In other news, Sophia seems to be coming down with something. Low grade temp and very fussy with extremely rosy cheeks, we were going in tomorrow for a weight check anyways so we shall see. Dr V is also seeming Sam as she is wondering if the falling has to do with fluid or something in his ears, and then if he does have an infection do we treat it or not? Do we risk C-Diff? Uh, I can't imagine what things will be like when contemplating this type of thing when he isn't on the gammaglobulin . Lord, your will be done...

Gammaglobulin

Today was prayerfully the second to last time we go for Sam's treatments. I was looking back at some pictures of him when we started. It feels like these guys have been a part of our lives for ever. We will miss them tremendously. I am posting pics from today as well as from our very first time we went. Can you see what I mean about how long we have been doing this? I wasn;t even pregnant with Sophia when we went the first time, and now she is going to be one

Sophia and failure to thrive

The failure to thrive diagnosis is such an odd thing for Sophia. The doctor is completely confident that there isn't any other issues with her except her size. She is cognitively so bright. She now says "up, mama, mom, dada, cat, baba (bottle) mall (milk) pretty impressive right? Especially considering she isn't even one yet. She is blowing kisses, waving bye bye, doing peek a boo, scooting etc. I struggle with this diagnosis as it typically has such a negative tone, so many think they failure to thrive kids are neglected or unloved or not stimulated. But this is so not the case, and as we are learning more about it the more I realize that there is such a negative stigma to it that I had no idea about. She is such a little love. My friend Shannon watched her today as I went to Children's with Sam. SHe will be sending those pics to me. But here is one of Sophia's new favorite places to go now that she is on the move. And she gets so excited to get there, but then gets frustrated as she can't scoot forward anymore

Chocolate chip cookies

Do you like my new dress and matching bow?

Isn't this dress the cutest? And of course we've got the bow to match. Thanks Auntie Tracy. Sophia was in such a great mood today. Sam on the other hand is definitely unleashing the two year old attitude on us. He is fiesty and occasionally defient. He is trying his hardest to be independant and do things for himself but gets so frustrated if it doens't go his way.

Hanging out with our cousin

Today we got to spend some time with Matt's cousin Traci. It was great as we never get to see her now that she is living in Virginia. Her husband Peter is currently in the military and is oversees keeping us safe so please say a prayer for his safe return in 74 days (I think)