Thursday, February 26, 2009

Thankful Thursday

Wow I have gotten away from this lately. Not that I am not thankful just life gets so crazy that I get sidetracked. Well anyways my LIST of so many things I am thankful for this week...
-Sophia's appointment with endocrinology going well.
-her weight gain, today she was 15lb13oz (up from 15lb8oz) on this particular scale
two weeks ago.
-My father in law who came and saved the day since Sam threw a bottle cap down the
toilet and clogged it!!!
-for friends who are so supportive and encouraging. For their love and creativity
-for mom's surgery going well, and for her feeling better each day.
-for warmer weather tomorrow
-for a good night's sleep tonight (I am thanking God in advance for letting my kids
sleep through the night tonight)
I am so blessed and often times get caught up in the day to day life of these beautiful kiddos that have so much medical stuff going on I forget to say thanks. In other news today when we were in the doctors office, everyone came to say hi to my kids. That goes and shows you how often we are there. One of the people in referrals even asked to take their picture. They all come out in shifts to say hi to my kids. One of them even takes Sam for walks while we are waiting or if it is just Sophia's appointment. I am so thankful for all these guys. Taking the two kids can be a little much sometimes but not with our primary

Tuesday, February 24, 2009

Endocrinologist

Today Sophia and I went into Children's Hospital together. Pretty sad when your only time to spend time with one child at a time is to go to the doctor. Oh well. It went very well. She weighed 16lb 4oz, which is what she also weighed at GI. He is testing her for a specific syndrome that a family member has on Matt's side of the family, but other than that he doesn't seem to think that there is anything else possible going on. He thinks that she may just be a peanut, he discussed certain things to look at between now and age two and then between age two and age 3. All in all it was a good visit. We now just have to wait for the blood work to come back. Do you know she didn't even cry when they poked her?!?!?!
In other news please pray for my mom as she is at Brighton Marine Hospital this evening having her kidney stones removed surgically. They were too large and causing too much pain. She will have to stay overnight but should be able to come home tomorrow. Please keep her in your prayers.

It's Not about You

Tuesday's Tribute
Yet Another Jay and Deb Production.

If you have forgotten about It's Not about You Tuesdays, please go to http://halftimelessons.blogspot.com/2009/01/tuesdays-tribute-its-time-to-give-back.html. This is such a wonderful idea, and although I don't have the eloquence of so many, I do realize how blessed I am and realize that there are so many people out there are struggling. So today please pray for the Cox family...
This week I have come across the blog of the Cox quads, these babies are preemies who were born somewhere around 29 weeks I believe. They have been doing fairly well for their gestation age althoug two of the babies were diagnosed with Grade 3 and Grade 4 brain bleeds. So I am asking for your prayers for this family, mom and dad are: Bret and Heather, and the babies are Brody, Baxlyn, Kylee and Korbin. You can follow their story at www.coxquads.blogspot.com

Monday, February 23, 2009

Sometimes being a mom is...

(this post is more for my own memories but feel free to read on....)
Sometimes being a mom is:
1) Hysterical, today as I was sitting on the couch Sam was staring at me very
intently. I wondered what his 2.5 year old brain was thinking. And then he said
"Mom, why are your boobs so big?" Wow! I guess he is a boob man already!!!
2) Disgusting, you know it is bad when you pick up your sweet little angel from her
crib in the morning, and you both have to be changed!!! Sophia was covered in
poop from her armpits to her knees! YUCK!
3) Heartbreaking/Stressful, so often Sam complains that "Mommy I don't feel very
good." And then he asks me to make it better, I only wish I could baby boy!
4) Scary, have you ever heard thudding as something falls down the stairs? I had
that terrifying fear on sunday when Sophia fell down the stairs. I can't even
begin to say how devastated and scared I was when this happened. But praise God
she is fine.
5) A tremendous blessing Each morning I am greeted by hugs and kisses from Sam,
and he now says "Mommy I love you so much!"
6) A tremendous challenge: the laundry, the dishes, the toys, the runny noses, the
poopy diapers, the spills, the leaks, the drips, the tantrums, the whining, oh
sometimes I want to put myself in a time out away from it all.
7) Frustrating: when your two year old keeps whining and complaing and asking why?
8) Exhausting: constanly caring, loving and worrying about your beautiful blessings
9) Fulfilling/rewarding watching your children learn and grow, hearing them say how
Jesus loves them and forgives them, watching them act out the things you have
taught them: sharing, gentleness, kindness etc etc
Today I am just so thankful. I am thankful for the booger noses, for the fussiness, for the crying for all of it. Because God has chosen me to be a mom, and I am truly blessed. I am so thankful, and though somedays seem never ending, and exhausting, each day is such an amazing blessing.

Sunday, February 22, 2009

Siblings




Well I think the kids are getting to the point when they frustrate each other. We have been in this wonderful period where Sam is always taking care of her and getting her toys and sharing with her. Well now that she is moving she gets into his stuff and HE DOESN'T LIKE IT one bit. He tried to move her himself. It was so funny I had to take a picture.

Saturday, February 21, 2009

Sam I am


Look Sammy can dress himself!!! His choice of clothing is a little questionable but doesn't he look so proud of himself? Oh I just love him

Wednesday, February 18, 2009

GI update






Well we went to see the GI doctor on thursday of last week. I am quite overwhelmed and confused about some of the info that we received. It was a lot so please bare with me...
Lets see for Sam, the main thing is that the probiotics that he is on (and which were initially recommended by the GI doctor in a low dose) are enough to cause a serious systemic infection that would be terrible for him because of his immune deficiency!!! The GI doctor was dumbfounded with the amount that the other doctor told us to give Sam. I am so frustrated, as this other doctor was given a thorough explanation of all of Sam's medical history and still made this recommendation to us. So that was quite shocking. Secondly he doesn't believe that Sam could possibly be allergic to all of the things that the skin testing is showing him positive for. Good NEWS!!! But we don't actually know what he is allergic to and what is a false positive, as the gammaglobulin that he gets could carry allergies from the people who donated it. So the allergy piece of things is still an unanswered piece of this puzzle. We did get some blood work drawn for some allergies so we shall see what those are some time this coming week I believe.
Now for Sophia: He isn't completely sure what is going on with her. He is wondering if she is silently refluxing so has started her on Prevacid to see if that makes any difference in her interest in eating. Secondly he is wondering if her stomach moves food through very slowly so that she is always feeling full because things are moving so slow. So he has prescribed a medication to get things moving through quicker, which means she is having some major BLOWOUTS in her diaper!!!
We will follow up with GI again soon but for now this is what we are doing. I feel like I have my own pharmacy for these kids. Not to mention how expensive things are, one of Sam's is over $40 and not covered by insurance, and Sophia's copay for one of her's is $25. These kiddos are EXPENSIVE!!! Thanks Auntie Chantal for coming with us, you were a lifesaver!!!

Boston Children's


Say Cheese!!!


My little man with the big chocolate eyes that melt my heart


I just missed her mom and wanted to make sure she was ok

Standing up like a big girl

I just can't get enough of this smile

Tomorrow we head into Children's again with the kiddos. They both have GI appointments. It is with Sam's regular GI. I have been really pleased with him, and am hoping he can shed some light on what we should do about all these allergies. Sam had another allergy testing day today and EVERYTHING they tested him for he was allergic to! I don't have a clue what we are going to do with him.
Sophia has yet to see GI. But with her now being diagnosed as Failure to Thrive we have a whole new game plan with specialists for her as well. So I will also be curious to see what they have to say about my little 15 lb 11month old.
In happy and exciting news, Sophia is pulling to a stand all by herself!!! She just started yesterday and now does it quite easily. She heard Sam in the tub and pulled right up to see. She is also scooting all the time now on her bottom. Now the getting in to EVERYTHING begins. But I am so relieved to see her moving and becoming more active and mobile.
Sam also misses his sister when he can't see her and just scales her crib!! Crazy kid. But it is so cute. She loves being in her crib so if I have to run downstairs to switch laundry or whatever I just put her in there. Sam climbs right in too. And then all you hear is the two of them laughing together. Oh the love between siblings....

Tuesday, February 17, 2009

It's Not about You

Tuesday's Tribute
Yet Another Jay and Deb Production.


I have recently come across this idea from another blog reader (thelifeofsuz.blogspot.com), thanks for sharing. This is an effort to remind myself and others that it isn't all about me, or my family. So each tuesday my goal is to share a story of some fantastic person/family/experience that has challenged, encouraged, educated me etc.... I will pray for these people. I will pray for you. If you have a request a thought anything you would like to share, email me, or comment here and I will pray. Tuesdays is not about me, it is about YOU and your needs. GOD BLESS!!!
This week I am writing about a beautiful young life, who left this world too soon. Jonathan Roberge a 22yr old graduate of Leominster High School was killed in Iraq this past week while driving a humvee, I am praying for his family and his friends. For those that are left behind that are left with unimaginable grief. I am praying for God's strength, peace, and hope for them. I am praying that God carries them in His hand in these next days as they celebrate his life, and mourn his loss. WIll you join me?
http://www.sentinelandenterprise.com/ci_11722684 A fallen hero comes home

Saturday, February 14, 2009

Valentine's Day worries

Well yet again we are waiting with bated breath to see what is going on with our guy. On thursday evening Sam started complaining about belly pain, but he has done it so frequently that we are never really sure if this is a new pain or the chronic pain. Ultimately it doesn't matter, as you never want to see your child miserable.
Then on friday he had some very bizarre looking stools, after significant whimpering. He was certainly very uncomfortable. The stools looked oddly reminiscent of past stools that were full of blood. And then one of the last stools he had was very mucousy. So here we are again, waiting for lab results, to tell us if he is bleeding yet again. And if he is bleeding again, the where we go from here situation is very frightening. Our options from GI are not appealing, but if he continues to have bleeding are our only option. He ate horribly today and was laying around on the couch with little to no energy this evening. Poor little guy. He did get incredibly excited and jumped off the couch once he had opened his MAIL from Meme'. She got him at Thomas the Train valentine's card and it totally made his whole day. Thanks mom!!!
In other news Miss Sophia has been congested since thursday. I am wondering if she has the dreaded RSV virus, as that is all I have been seeing at the hospital the last few weeks I have worked. I come home and change and wash up before I tough them but who knows. She seems to be tolerating all of the mucous well, but it is still stressful, as I know how quickly mild respiratory symptoms can turn into crisis with those under one year of age. Please keep both of the kids in your prayers.

When I grow up...

I WANT TO BE JUST LIKE MY DADDY!!!

My budding photographer took these. Not bad for a two year old!!











Sophia had her first actual early intervention appointment today. The PT was very impressed with her strength but raised the question that maybe she is not crawling because she has a lot of pain when on her belly and therefore just cries and tries to get rid of the pain. I have wondered if she had pain when she was on her belly before as well. THis would go along with other stuff going on with her as she isn't gaining well and they are wondering whether there is some type of metabolic thing going on. The PT will bring an occupational therapist next time to work on the food aversion, I am hopeful they will actually come up with something that I haven't already tried and we can get this little peanut to eat. If anyone has any suggestions PLEASE share!!! Thanks
While we had Early intervention Matt and Sam went sledding. Sam had so much fun and talked about it for days. Matt also let him attempt to take some pictures. So cute! Hard to believe my little guy will be three in less than six months. Where did my little baby go?

Thursday, February 12, 2009

WEIGHT GAIN!!!

I have no pics as of right now, but she gained two ounces this week!!! PRaise God. Will post pics later.

Saturday, February 7, 2009

Tristan's party and painting

We went to Tristan's first birthday party today. Sam absolutely loves Tristan and had so much fun at the party. You would think that he would be bored since he is a year and a half older but he has so much fun and keeps asking to go back. Shannon did a Candy Land theme. It was the cutest party ever. Happy Birthday Tristan!!!
PS: there are a couple of new posts before this, I got totally behind this week.

Tristan and Sophia


The birthday boy and his cake



Do you think Sam enjoyed his cupcake?


Today Grandma and Papa brought Sammy a water color book. He had so much fun. He hasn't done watercolors that I can remember before. He was concentrating so hard on doing a good job with the paint. Thank you Grandma and Papa!



Friday, February 6, 2009

Sadness, worry and frustration






We went back to the doctor today for a weight check. I am devastated. I can't for the life of me figure out what happened. Last week at her weight check she had gained six ounces, and this week she has lost 12ounces!!! She now weighs 14lbs 9oz ounces and she is almost 11 months old!!! I don't even know what to do. I am waiting to hear back from the doctor. I am not sure what it is I can do to help her. And to top it all off she is refusing to eat today:-(

Wednesday, February 4, 2009

Post office





This is such a great toy. Sam and Sophia both thoroughly enjoy it. They even enjoy playing with it together. Sam got it for Christmas. It has different shaped slots for different letters, and even has removable stamps for all of the letters. Sam said that he was sending a letter to "Auntie TeeTee's house, far far away" Poor little guy, is starting to realize we can't just jump in the car and go see her, and that she can't just come over here either, it has taken him a while. WE MISS YOU AUNTIE TEETEE (and Uncle Danny and NeNe

Tuesday, February 3, 2009

Gammaglobulin






We went to Children's today for Sam;s transfusion. It went very well. Sam was excited to see his friend Khadeisha, the nurses and the clowns. He got to do some gluing and some cutting, played with all kinds of toys and just had fun. They are so good to us there.