Wednesday, March 25, 2009

STill sick

We are in still in the cycle of sickness here. Sophia is in a great mood, but just has a nasty cough. Sam is fussy and demanding, and coughing tons, with a temp. See how they are in the AM. It may be nothing but with Sam you just never know, maybe a trip to the doc is in our future

Tuesday, March 24, 2009

SICK (Edited)

UPDATE: Sam is now running a fever and acting ill, not usually a complainer but now he is a little fussy. Looks like we will be taking a trip to the doc tomorrow. I am just anxious because next tuesday a week from today is supposed to be the last IVIG for Sam. If this illness turns into anything then they probably won't stop the treatment. And his immunologist said he would hold off another YEAR if we don't do it now. It is scary as Sam has done so amazingly well with the IVIG, he has only been on antibiotics once in the last year and a half. He often still has fevers, rashes, GI upset etc, but not all together. The fevers are usually non-related to any other symptom. This sickness has fever, cough, lethargy, fussiness, etc. Please pray for my little guy. That the right decision will be made about the IVIG and that I can handle whatever that decision is.




We are surviving here on the homefront. Sophia is no longer running a fever, but is now instead having long harsh bouts of coughing which has led to vomiting. Sam is also having these couging epidodes
Our house is starting to show more frequently (3x in the last week) so please pray that we can sell and move on.

Sunday, March 22, 2009

Allayna




Our niece had her eighth birthday today. Hard to believe how fast she is growing up. So we went up there to celebrate her birthday. She is turning into a beautiful young lady, who stated that she was half way to getting her license!!! Can you believe it? Growing up way too fast.
But this AM I met the doctor at the ER to get Sophia seen again. He realized that the first antibiotics weren't working and that her ears were worse, he prescribed a stronger antibiotic and it really has made a huge difference. She hasn't had a fever since the medication. So prayerfully this one is working. She and Sam have started to cough a little bit. It makes me so nervous when Sam gets sick. He has done so amazingly well since we started the IVIG that I am petrified of him getting sick. They both are having some nasal drainage but hopefully it doesn't amount to anything but a simple cold

Saturday, March 21, 2009

Sophia's first birthday
















We celebrated Sophia's first birthday today. It is so hard to believe that my little girl is already one. It was a nice time. She woke up in the morning feeling like herself and didn't have a fever. So we went and celebrated with our friends, this wonderful blessing. People were amazingly generous and we are so thankful. Thanks to all of you for your generosity and for sharing her day with us. Towards the end of the party she started gettting hot again and very fussy. Our primary had come to the party and suggested having the oncall doc call in a new prescription for a stronger antibiotic but when we called him he was unwilling, as he wanted to give the current antibiotic one more day to work. My little angel screamed for four and a half hours last night. A special thanks to Auntie Paula for saving my sanity and holding Sophia that evening. Her temp was up to 104.1 at one point!!!








One pic to hold you over


Yesterday was Sophia's party. It went well, poor girl continues to be sick though. She was such a trooper. We had so many come and celebrate with us. And she just looked so sweet. But alas all things come to an end, we came home and she SCREAMED for nearly 4hours!!! Of course our doctor (who even came to our party as a friend, didn't want to overstep the boundaries) was off this weekend. So the on-call doc says to continue with the amoxicillin and he wants to see her first hting in the morning. To top it off we also have a house showing in the morning. Matt has worked the last 3 nights, and stayed up practically all day yesterday to do party stuff, so he isn't able to help and Sophia is miserable. Needless to say it is almost 2:30 in the morning, and I find myself trying to clean now.... Anyways here is one beautiful picture of my girl for now, until I can get the rest of them up alone with two or three other posts that I am behind in posting...

Friday, March 20, 2009

Puppet Show



Sammy and I went on a date today. We left Sophia at home with Grandma (thanks Grandma) and went to the library for a puppet show. It was so nice to be able to spend the time with just Sammy and not have the time that is spent with just the two of us be hospital related. After the puppet show we quickly went over and picked out some books. He is just the sweetest little boy and I am so proud of the little person that he is becoming. He picked up a book, and said "Is this your favorite mommy? (it was a book we already have at home called SLEEP SONG)" I told him that it was and he said "I pick this for you mommy, I make you happy." How sweet is that?
My little love bug....
Sophia is feeling still pretty crummy, worse than yesterday. Go figure start the antibiotic and things get worse

Thursday, March 19, 2009

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

Wednesday, March 18, 2009

3-18-09









Today was Sophia's actual birthday. Daddy made her a special pancake which she ultimatley didn't eat, big surprise being failure to thrive and all. But it was so cute. We then went to our friend Carol's house for a playdate. The kids had a blast, Sophia was quite clingy and didn't appear to feel that great. Sam just loves being outside and spending time with his friends. He was a little leary of the cows, goats, and pony but loved the sandbox. Sophia really enjoyed the fresh air and being mobile all by herself, even though her course of movement is still scooting on her bottom, she is starting to crawl occasionally too. When we went inside Sam and the older kids were all looking under the television it was so cute, I of course had to try to get a shot.

Sophia Grace Weber!!!!











A look back to a year ago today...
I had been admitted to the hospital two days prior on sunday. Dr V was out of town and I was admitted by another doctor. I had woken up sunday morning with a horrific headache and called mom. She came over and picked up Sam to bring him to Matt's aunt and uncle. We then all went up to the hospital. And the waiting began. My liver function tests were increasing, my blood pressure was slightly elevated. It wasn't alarmingly high but just enough with my history to bare watching.
They decided to keep me overnight and see if the headache got better, if the liver stuff got worse, and how my BP did. Dr V was home the next day and didn't want to let me go home. So we stayed another day.
Tuesday morning I woke up and felt 100x better. The HA was better blood pressure was good and they were just repeating my labs to see if I could go home. Dr V was going to discharge me, when the labs came back more elevated. She talked to the OB doctor that was on, and they decided that I was far enough along to deliver if necessary. They would repeat the labs at 11am, and then do a c-section (because Sophia was breech). The 11am labs had increased by about 30 points or more, so they knew that it was time to deliver. So then the craziness of the day started. I was calling my whole family and Matt's parents too to watch Sam, but none of them were available My sisters were in school, I couldn't get a hold of Denise, Dad wasn't answering his cell, and either was mom. So I called Denise's home number and the man that they had living there at the time, told me that my dad had had a heartattack. No one had wanted to tell me. Although he was downstairs in our ER, I had no idea until that point what had been going on.
So mom went to Boston to ST Elizabeth hospital with Dad. And Matt's Aunt Terri and Uncle DAnny got Sammy for us.
Dr D (the OB) did an ultrasound to make sure Sophia was still breech and we signed all the consents to do the surgery. Then I started to panic, as I didn't want a spinal. The anesthesiologist was wonderful and totally helped me to relax. The spinal was in and I didn't even feel it go in. I layed down and anxiously waited to hear the cry of my little miracle. When they finally got into my womb, they found that Sophia had flipped and was no longer breech!!! The doctor's felt so bad. It was funny to me though. Sophia came out screaming her little head off, it was the most beautiful sound in my entire life. It was amazing. I never got that initial experience with Sam.
Sophia Grace you have changed my world, you have opened my eyes to beauty that I had forgotten existed. I pray for you always, I pray for God's guidance to show you the way that He would want you to go. I love you from now until eternity. You are a beautiful amazing tiny little creature, who I am amazed by each day. I thank God for you. I thank God that He has allowed me to be your mommy. The amazing opportunity I have to change the world through you is amazing. Your happy smiling personality and strong will are a testiment to your personality. Your scooting instead of crawling, your eating habits (and struggles) show us that you are your own little being who knows what you want. We pray for you little one that God's grace and protection will be around you always. I love you little one!!!