Tuesday, September 30, 2008

MILK


Well since last week when I stopped giving Sam milk to drink his stools have become firmer and less frequent. Although this evening they have been loose again, I am wondering if that is just because he had some extra juice today. Hoping that tomorrow they are firmer again. I spoke with his primary care doctor today. She is going to send us to some more specialists, exactly who I will find out tomorrow. She is also contacting his immunologist herself tomorrow to see what he thinks. Her thought is that if they want to actually do testing for a milk allergy that he would have to wait on getting the gammaglobulin, because after getting that his reaction could be caused from something in the gammaglobulin from the donors. So now I feel stuck between a rock and a hard place. Do I just stop giving him dairy and hope this gets better? Do I risk him not getting the gammaglobulin at this time of year and risk him getting sick? I just don't know.... Please continue to pray for him.
The other issue is that Sam has had a few random fevers again. I don't usually medicate them except when he is feeling terrible. So I got to thinking today, if he has a GI bleed then I shouldn't be giving him motrin, and since his LFT's are elevated I shouldn't give him tylenol. GREAT?!?! Now what?
I have NO pictures of him today. He was so busy at the park they all came out blurry. So here is one of miss Sophia, because as my friend says she is in the "ploppable phase", a phase I will miss greatly when she is running around like her big brother. Can you believe how big she is? She can sit on her own for a few minutes at a time already

Monday, September 29, 2008

Just struggling

Look at this old picture I found!!!

I am so overwhelmed today as I think about omitting any milk or milk product from Sam's diet. Do you realize how much milk is in everything!?!?!?! I am also feeling quite guilty that I didn't think about this before and he had to have the scopes done and go through so much. If I would have been more on top of things then maybe we wouldn't have had to go through so much with him.
Yesterday was Matt and my sixth anniversary! I can't even believe it has been that long. Looking back over the last six years, is a constant reminder to me that even through the struggles God has ALWAYS been there. We have had so much to deal with these first few years, and now with Sam it is proving to continue. I know HE is with us, but sometimes I just feel so defeated in this situation.
We see the nutritionist this week and I am praying that we get some answers and that Sam will tolerate this whole dairy free diet.
Plesae say some prayers for my friend. She has three chronically ill children and her husband just left her! Pray for strength, hope, joy, a better financial situation and for her kids health. Thanks

Thursday, September 25, 2008

Thankful Thursday

So many things to be thankful I don't even know where to begin. Thankful for Sophia's check up and her being so healthy and happy. Thankful that Matt has a full time job. Thankful for the wonderful people I work with and for that are so supportive with my childcare. Thankful for Lisa who is watching my kids when I have to work during the day now. Thankful for friends and family who are so supportive and uplifting through all of the craziness. Etc etc...



SAMMY IS THANKFUL FOR HIS NEW BOOKS that daddy brought home (what a blessing it is to receive all these wonderful books, Sammy just loves them).
Sammy update: I talked to the GI doctor today to let him know he was having bloody stools again this week. He mentioned this new technology in which they would put him under general anesthesia (AGAIN!!!:( ) and put the scope in like they just did a couple of weeks ago. The difference this time is that when they get to the small intestine (which they can't visual with a endoscopy and colonoscopy) they would put this little capsule in which has a camera in it. THe camera would travel through the small intestine taking pictures as it went and they could then see where the bleeding was coming from. The doctor mentioned today that bleeding in the small intestine could be from a milk allergy so we are going to cut dairy out of his diet. I had NO IDEA how many products have milk or milk products in them. My goodness this shall be interesting.... We will meet with a nutritionist next week to make sure he is still getting all the daily requirements of nutrients that he needs. Please continue to keep him in your prayers.

Tuesday, September 23, 2008

6months well child check






Wow my baby girl is six months already. I can't believe it. What a wonderful journey we are travelling with her. I am so blessed and so thankful for her. We had her appt today and of course she got the three shots. The poor little thing screamed this terrible high pitched cry while they stuck her and then as soon as I picked her up she stopped. The nurses were like "wow she's good." I made the mistake of bringing Sammy with me today and he saw her get the shots. It was very upsetting to him, and he kept saying "sister get boo boo too." THat is one of the first things he told Matt about when Matt got home.
Anyways my little tiny peanut is 12lb 11oz and is 25inches long. She is in the fourth percentile. I guess we just make them little. Although at the same age Sam was 15lb 11oz. The doctor was a little concerned with her size and will keep an eye on it but other than that she was pleased with everything. She was happy to see how much trunk control Sophia has and how alert she was. She said we can wait another month to really start the food so that is relief to me. She felt bad that I was pushing the food because of her recommendation, and told me several times that it is okay if she is small as long as she continues to grow. So she said to just try it when I feel like it.
I also used this opportunity to talk about Sam. I brought a sample of this mornings stool with us and it had lots of blood in it:-( I told her what has been happening the last few days. She is actually going to make a call to UMass hospital to have someone totally new, totally different review his case to see if they get any new ideas. She will let me know tomorrow or thursday when we need to go there. In the mean time please continue to keep Sam in your prayers.

Sunday, September 21, 2008

I have a problem


My beautiful girl


Silly Sammy


This sitting thing sure is hard Mom

So I have an addiction. I CANNOT stop taking pictures of my kids! I realized today taht I have taken more than 2000 since the beginning of the year. Too bad I couldn't get paid for it or win some sort of prize. But here are the newest ones from this week. Matt starts working tomorrow so please keep him in your prayers, and also pray that God opens the door to something that he will really enjoy and that will also help us to get out of debt.

Friday, September 19, 2008

Progression of life










Yesterday I got together with my friend Maria, it is funny to think of how different our lives are then they were two years ago. Here is a look back to where motherhood began:) We both had our first born kiddos early, her twins were born 6wks before Sam and were 1owks early, Sam was born 5wks early. And now we both have another child. And little Ian was a 38wker! Good job growing him Maria. So cute! We talked alot about how amazing it is to have the baby come home with you and not have to leave them in the NICU, or how neat it is to keep the baby in your room in the hospital. Not things that some people ever realize is such a priviledge

Thursday, September 18, 2008

6months old







Can you believe it? My girl is six months already. She is 12lb2oz on our scale, the official six month weight will be next week. She can roll from her stomach to her back when she angry (HATES being on her belly), she likes to sit up and hold on to things. She LOVES her brother and is often heard laughing squeeling whenever he is around. She continues to nurse every 2-3hrs during the day but is sleeping through the night so I don't mind. Feeding her food is going terribly but maybe eventually she will like the spoon. Her favorite toys are her big brother Sam, her binkies, and anything crinkly. She still has very little hair but it is slowly coming in. She has no teeth, her eyes still seem to be changing, some days look green, blue, hazel or even like a purple color. She is such a tremendous blessing and I am thoroughly loving being her momma. She is also now doing the raspberry sound and making gurgling noise as well as MMMMMAAAAA, which is so cute.

Thankful Thursday

This week things I am so very thankful for:

~Sammy's biopsy results came back NORMAL!!! No real answer to the problem but at least the biopsy is normal
~MATT GOT A JOB!!! What a relief. I am praying for something better but for now we
are thankful that God has provided for us again.
~Thankful for family and friends who have been so supportive of us through the
challenges we have been facing.

Tuesday, September 16, 2008

Rough Day






Today was Sam's transfusion at CHildren's. This was the toughest day we have had in quite a while. It took three times to get the IV and he was crying the whole time. I don't think he was feeling well today and was running a low grade temp or that is at least how he felt. He was quite subdued. He kept saying "Ouch Mommy" And looking at me to make them stop. It was breaking my heart. How do you deal with that. Your child looking at you with tears in their eyes saying Ouch mommy and wanting you to hold them, and you just don't pick him up or comfort him, you just allow them to keep hurting them. IT WAS A BAD DAY!!!!
On a better note the biopsy results came back normal. Praise God!!! The doctor talked about putting Sam on long term antibiotic therapy and a variety of meds to help with the stooling but I am leary of doing that. I want to talk to his primary and see what she thinks. We also have an appointment with the motility specialist next month so maybe I should wait to talk to them?
Alright for all you mommys out there: HOW DO I GET SOPHIA TO EAT?!?!?!? I have been giving her cereal for over a month now on a daily basis and all she does is cry, I have tried all the types of cereal, made with breast milk, formula and even water, warm and cool. I have tried all the vegetables and some fruits and all she does is cry. What do I do???? I am so frustrated and any advice would be welcome. Today I was dipping her pacifier in the food and then letting her suck on the paci that worked but that is RIDICULOUS!!! Help please

Monday, September 15, 2008

Still waiting for the results

No idea why he wanted to lick her feet!!!



I love my brother

Like my new hat?

Can I sleep in sister's bassinet?




Daddy took Sam and Sophia to Lake Dennison




I am so frustrated today as I was told to call on friday or today and did and still haven't heard back the results from Sam's biopsies. I know I need to be patient, and like Matt;s says if it was urgent they would have called us, but if you tell me to call for the results the least you could do is return my phone calls!!!

Thursday, September 11, 2008

Thankful Thursday




I was reading this great blog recently in which the mom had a post titled "Wordless Wednesday" and had this great pic. Well that got me thinking about doing something like that. So I came up with this Thankful thursdays. I am so blessed and so fortunate to have so much and although things can be quite difficult with having a chronically ill child I have decided that at least on thursday (and every other day) taht I need to stay focused on all of my many blessings. They may seem small to some, they may be amuzing but for all I am thankful. So this week I AM THANKFUL FOR WASHABLE MARKERS!!!!!:-)

Wednesday, September 10, 2008

Sophia is sick


My baby girl has been sick all week. Poor little pumpkin has been running a fever 101 to 102 all week! She has been quite the little trouper though. She has been a little fussy until today she has gotten much worse. I was trying to avoid the doctor like the plague this week but maybe that is where we are headed tomorrow... In any case please say some prayers for miss Sophia Grace

Tuesday, September 9, 2008

My beautiful kids






Here are some random pics of the kiddos since we brought Sammy home on friday. He is such a ham. Still not eating well and having loose stools, I haven't seen any visible blood, but haven't guaic them either. Sophia has a fever this morning 101.3 and a runny nose but hopefully it is nothing.