Post-op Day 6

Coolest puzzle ever! Auntie Tracy and Uncle Tim and their kids got Sam this awesome dinosaur puzzle for Christmas. We have done it several times each day.


This is Chantal and Andrew's dog "Rake". He is so sweet! It is fun having a dog


Sammy has been playing "Go Diego Go" on my computor


Sammy and Auntie Chantal built a card castle


Sam had a terrible night last night. I was convinced that I had made the wrong decision in not bringing him to the ER. This morning he seemed to have much more difficulty swallowing then he had had previously. Chantal and I made the mistake of looking in his throat. NOT PRETTY!!! We both were completely grossed out. I don't ever recommend looking in someone's throat that has had this surgery! It looks like pus is coating his entire throat and uvula, with scattered bits of green infectious looking material. IT is DISGUSTING!!!! So I of course called the on-call doctor again, and he kind of chuckled. Stating that they tell parents not to look in the throat because it looks so awful, but that what I was describing was completely normal.
His spirits/activity level got better throughout the day. But eating has been almost non-existent. I have been physically forcing him to drink, but I am sure he hasn't had quite enough fluids today. Adn then tonight he finally ASKED and WANTED to eat something. He wanted ice cream:-) And kept wanting more and more. So guess how much he ate? SIX SCOOPS!!!!:-) That will get him so calories.
Thanks for your continued prayers. I would also like for you to pray for my sister's baby Darius, who is now one month old. They are not exactly sure what is going on with him. But he is currently at Children's Hospital in Boston. They are doing lots of testing trying to figure out why he is anemic, has a distended abdomen, is intermittently jaundiced, and has had intermittent vomiting and now is having trouble stooling. Please keep him, his mother Doreen, and all the doctors caring for him in your prayers.

PIZZA!!!!!!!!!!!!!

Enjoying the finished product


Our little masterpieces:-)


The chefs


My kids LOVE to make pizza! We just have whole wheat dough, pizza sauce, mozzarella, and a variety of toppings. They just love to do this, and it is a fun way to let them participate in cooking.
In other news I kind of had forgotten about an application I had filled out for some assistance with our health insurance. Well Praise God today we got the answer that it had been approved! I am just so thankful. It never ceases to amaze me how perfect God's timing truly is:-)
Sammy woke up with a rash today. Not quite sure if this is related to the antibiotics he just finished or not, I guess we will see tomorrow....

Strawberries!!!

WE had so much fun picking strawberries. I think the kids probably ate a pound or more each. They were eating them as fast as we could pick them. They were absolutely delicious. Prices were great. They even have "Jamming Parties." Where the owner of the farm comes to your house with all the supplies (jar's pectin etc) and teaches you how to make jam's and jellies. I think we will be scheduling that visit.


Sophia Sam and Taron

Endoscopy

Tomorrow Sam goes back into Children's to have the Capsule endoscopy. We got the all clear to do it, even though he has been sick all week. We went and saw Dr V and she said that she is concerned that he is having chronic sinus infections, and is wondering if it is related to the new house?!?!? Uggh how awful would that be. So she didn't put him on antibiotics as they didn't really work last time, we are going to try some allergy medication to see if that works.
Poor little guy can only have clear liquids since noon todya and I could barely get him to eat anything today prior to lunch. He is so hungry, he is enjoying the constant popsicles, but I don't know if I will ever get him to sleep as he is so hungry and wants to eat.
Tomorrow is Sophia's second birthday and I feel terribly guilty that we won't even be with her. She is with a wonderful friend who is planning to do some fun things with her but still I am sad that I won't get to spend the day with her. I will do a special birthday post probably friday night. Can't believe my little princess is turning two!!!!
Sam will be put under general anesthesia tomorrow around 8am so please say some prayers for him. Pray that all goes well, but also that they can find where his intestines are so prone to bleeding and taht it is something that they can fix.

Breafast

Grandma took us out to breakfast the other day, and we had a great time. Thanks Grandma. Matt's grandmother, his Aunt Coleen and his cousin Naomi also joined us. The kids had fun, and Sophia ate amazingly well. Sam did more playing than eating, but he still had fun

Sammy doodle bugs

It would appear that there is something going on with Sammy. I haven't wanted to admit that there was something going on with him as this is scary to me. Now that we have taken the break from the IVIG to see how he does it is hard to even think about what could happen now. About a week and a half ago he started complaining of some belly pain,(which he often does) but this was different. It was consistent, and in the same spot each time. He really stopped eating and really started just drinking. His stools have been watery and very smelly and he has had increasing amounts of gas. Over the weekend he started running intermittent fevers, and became even more irritable. Tuesday his temp was up to 103! And he only ate one bite of yogurt that day.:-( Anyways called his primary thinking that maybe it was C. Diff again but it wasn't. She then said to get in touch with GI, but that if it wasn't better by yesterday that she would want some blood drawn. WEll I called Children's on tuesday and have yet to hear back from them, they are usually so good about getting right back to me:-( So now we wait, he just woke up a few minutes ago, and is already complaining and is laying down again on the couch:-( Please say a special prayer for him as we determine what this is, and how it needs to be treated.
We have been doing a lot of laying around and watching KidSongs, Curious George and Clifford the Big Red Dog.

Wearing breakfast well

Yummy!!! We wear it well at our house

Well child check up

Sophia had her well child check up today. I still can't believe my little baby is one. Drum roll please.... We are now 16lb15oz, and 28.5inches long. She is gaining just extremely slowly. The genetic testing has come back ok, and the other tests have all come back ok. So the doctor thinks that this failure to thrive thing is just her not having an interest to eat. We have to go ALL THE TIME it seems like to get her weighed now, it sure would be nice if this little one would eat. She has all but rejected all food lately. We also found out that she has a double ear infection, which could possibly explain the wakefulness at night. She was started on amoxicillin today

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.

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

First Cereal

Today we gave Sam cereal for the first time. He wasn't overly impressed, and gagged multiple times. He kept sticking out his tongue each time we put food in his mouth and it would then run down his chin.