Our little lady

The last year in pictures...

My little princess at her first birthday (double ear infection and all)



Switching to a big girl carseat she was so excited in May of 2009


Feeding the goats at Davis Farmland in June of 2009



My little diva



We are so proud to be American and so thankful that God has allowed us to live in this great country. 4th of July 2009



Catch me if you can mommy!!! (She LOVES to play chase, and sporadically just runs away from us just for fun:-)



Playground playdate before the long winter comes along



Cooking with Mommy, a favorite past time of these kids of mine



Our trip to Florida for DJ and Lyndsea's wedding in November


Christmas beauty



Our little snow baby



This was an exciting day for me! Why, do you ask? Because she FINALLY has enough hair for not one but TWO bows!!!!



Can you believe it? My little princess is two! I feel like this past year has just flow by. You've come a long way in the last year Miss Sophia. A year ago, my little peanut was diagnosed with Failure to Thrive, because she was so tiny, and thus began a flurry of doctors appointments, weight checks, Early intervention, nutritionists, lab work, specialists, and pediasure. DRUM ROLL PLEASE!!! She now weighs 24lbs and is 33.5 inches tall. She is not little any more. They are still going to closely watch her but she is doing fabulously.
At two she is talking in complete sentences, sometimes up to seven and eight words. She is able to get her pants on, and is able to get some shirts partially on. She LOVES to take off her socks and shoes, which has been quite a challenge for me throughout the winter. She loves to have bows in her hair, she loves to have her toe nails painted. She loves to be out and about and playing outside.
She is so much like Matt in so many ways. She is organized and persistent. She tries very hard to figure things out, she doesn't give up easy for anything. She has a temper, and stomps her little foot. She has lots of time outs for hitting Sam, or for being fresh.
She loves to snuggle and sleep with me. She loves her blankie, her baby doll and her seahorse. She loves music and Curious George. She loves Noddy, and Bob the Builder. She loves playdough and bubbles.
She is such a social little girl, and says HI to just about anyone who looks at her. She loves her friends: Tristan, Alex, Maddox, Sadie, Hunter, Dasanee, and Ava.

Early Intervention

Sophia had her EI assessment today. We all expected that she would no longer qualify because she is so advanced in many areas and because she no longer has the failure to thrive diagnosis due to weight. And as expected she was beyond her age in many areas. She is currently 22 months old, the following is a brief assessment of how she did.
Her Social-Emotional evaluation placed her at 27months, this is her ability to express her feelings, interact with others, ande ability to focus and attend to tasks.
Her Cognition placed her at 23months. This is how she engages in purposeful play, to discriminate people and objects and to to solve problems.
Her GrossMotor placed her at 27months. All assessors were impressed by her capability to do many things, at one point they had asked me if she was able to stand on one foot while holding on to something, I wasn't really sure. She stood up and did it without holding on. Little Miss Independant.
Her FineMotor placed her at 25months. This how she draws, and uses her hands to assist her in the world.
Her AdaptiveSelfCare placed her at 27months. This area was a struggle for the speech pathologist as she feels there still is issues with feeding but due to the fact that Sophia is able to use utensils, drinks well from sippycup, strawcup and bottle and chews/swallows well she scored higher. For feeding she scored 27months, for toileting she scored 25months, and for Dressing she scored 29months!! Yup, she is already into fashion:-)
In her communication department: in the receptive language she scored 25months, this is her ability to understand what is being said to her. Her expressive language placed her at 26months, adn this is her ability to express her wants and needs through gestures and vocalizations.
So needless to say she has graduated from the early intervention program, although all evaluators felt concern for her with her feeding issues, especially since we will be stopping the pediasure. They were trying to finagle a way to keep her on their service due to a clinical issue but due to the fact that we don't have an actual diagnosis they were unable to do that. They noted that she seemed a little jittery, which I have never noticed before, and they recommended further GI studies to determine if there is a lower GI tract issue that is preventing her from eating well. But at this point, what is going to happen is we have to wean her from the pediasure and see whether she gains or loses weight

Failur to Thrive: NOT!!!!

Painting (more herself than the paper:)

So my little tiny pip squeak had a follow up weight check today, and lets just say that I NO LONGER have to worry about her weight!!! She no longer falls into the failure to thrive category and has actually jumped up on the growth chart to the
20th percentile!!! She is 23lbs fully clothed!! Way to go Sophia. Dr V was very happy with her growth. We will be weaning her from the pediasure in the next six weeks or so (per GI instructions) and so at that point we may end up doing weight checks again depending on if she actually developes an appetite by then. But for now NO WORRIES!!!! So hmmmm, what should I call this little beauty of mine instead of pipsqueak?

Denied!!!

Unfortunately we found out today that they would not cover the pediasure for Sophia. Her GI doctor is appealing it but it doesn't look too promising. I know God can provide this need, so please pray that He does. We have the swallowing specialist coming in the morning. I am looking forward to seeing if there is something there that could be instigating this whole failure to thrive thing. We also have a weight check tomorrow. I am praying that we have hit 18lbs again.
Sam continues to complain intermittently about not feeling well. I feel like as the days go on and we get farther out from the last IVIG that I am getting more anxious each day. I feel like we are just waiting for something to hit the fan. And now with this whole crazy swine flu I am really anxious about it. I know that God is in control but I am struggling to rely fully on Him right now.

GI update

Sophia and I went and saw the GI doctor today. He was not happy with her weight and she actually is down 7 ounces again:-( Aggghh! She weighed 17lb 7oz. He started her on a medication that they give to anorexic people that is supposed to stimulate her appetite. We should be able to get it from the pharmacy tomorrow I think. He also wants to increase her pediasure to 2 cans a day. I am just praying that the insurance will cover it because we truly can't afford to pay for it.
Her OT came today and has now recommended that we do a barium swallow so that is in our future too. We will have a swallowing specialist come next week to evaluate her whole swallowing process. I wonder if that will tell us anything????
Auntie Chantal got this little onesie for her when she was born thinking it would fit her LAST YEAR!!!! And she has adjusted to the new carseat and loves it as you can see

GI tomorrow

Well it is starting to look like they are really questioning Sophia's muscle strength in her mouth as well as maybe the actual structure of her mouth. We are awaiting the schedule of some new testing they want to do. They are hoping to get her in next week. ALWAYS something it would seem. She actually has gained some weight which I am thrilled about, however the problem is her eating has gotten worse, she is actually nursing more again. I am not sure what I should do with her, being Failure to Thrive and all, do I just nurse her because she wants and is willing to, or do I force her to eat? I wish there was a book that would tell me exactly what I could do to help her grow. WE go see the GI doc at Children's tomorrow and will find out other testing that they want to do besides the barium ones.
Sam continues to complain intermittently that he is "very sick", he actually was complaining yesterday of stomachache, but today has been more generalized again. Had a low grade temp and didn't really eat well today. He is so cute though, was asking to go to Children's Hospital to "make me feel better" Isn't that crazy? He actually seems to understand that the IVIG actually helps him even though he is only 2.5yrs.
In other news, I entered both of the kids in the Parents Magazine Cover photo contest. They would end up being on the front cover if they won,and then there would be a ten thousand dollar monetary reward. There are thousands of entries but if you would like to vote for us we would love it...
Samuel: http://www.parents.com/photos/photo-contests-1/cover-kid-1/725300088/
Sophia: http://www.parents.com/photos/phot-contests-1/cover-kid/710300006/
You can vote for both as they are in two different age categories, and I think you can vote more than once. Thanks so much. These are some of the pics that I used for the contest....

?Low tone with Failure to thrive

Any one out there who has become aware of this blog becuase of Sophia and her failure to thrive: Have you had a diagnosis of Low tone for a reason for the FTT? We had an occupational therapist come out two weeks ago that questioned whether we are having such a difficult time feeding her because of some type of low tone in her mouth/tongue. She gave me several ideas to try, and then came back today with a whole new bag of ideas and tricks to try. Now she is wondering if there is a strenght issue, whether or not her tongue, jaw etc is strong enough to chew the food and move it side to side and swallow it normally. I find all of this truly interesting because no one has really questioned anything like this before, and everyone has kind of thrown their hands up in the air and been like we just don't know... So anyways after she watched Sophia again today she felt that it probably isn't a low tone issue, as she is not drooling alot nor does she have her mouth hanging open or anything similiar
So now she is recommending some type of swallow eval or something along that line. Or at least to have someone come and watch her chew and swallow that specializes in that type of thing to determine whether it is a tone issue or a strength issue. Oh joy! More doctors and testing...
In other news we started the albuterol for Sam yesterday and have been having to give it to him every four hours. Not sure why seeing how he is supposedly not allergic to anything that is blossoming right now but we shall see. He has been very quiet and mellow these last few days, I feel like all of this bronchospasm is sapping his energy. We aren't to our "bad week" yet, and I can only imagine how that will be next week. So prayerfully things will get better and not worse. We don't go back to immunology for another two weeks. Scared to know what his IgG levels are, but also scared not to know. I wonder when this gets easier?

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.

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

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....

Failure to Thrive

Sophia practicing her clapping

Lillian and Sophia enjoying lunch

Owen and Sam sure do enjoy the trains

This morning we went over to my friend Myriah's house, Owen is one of Sam's best little friends. He really enjoys playing there
Today we had our follow up with Sophia's PCP, who mentioned something that I have been dreading hearing, something that I have been praying against. She said "Failure to thrive". I feel like a failure as a mother, like I should have prevented this. That I did something wrong to make her this way. Today her weight was 14lb 12oz. I must say also that the doctor wasn't concerned with her cognitively at all, as she is saying three words: mama, dada, and Up. She also says her version of Yay, which then leads to her clapping. She was concerned with the lack of crawling, but also remembered that Sam was a late crawler too. Her main concern is that malnourishment usually starts with weight loss, which we have, and then leads to height and head circumference involvement. The most concerning thing about Sophia right now is that she isn't even on the growth chart for weight, but is close to the 50th for her height and her head circumference. If all three were in the same percentile it wouldn't be that concerning. Here is some information that I got off Medline which is a great medical website, but it doesnt' really make me feel any better. Many of these things I know can not be contributing factors but there are a few that I can not 100%rule out. The thought of dealing with another child that is medically fragile (that is our insurances label for Sam) is overwhelming. I am praying that this little peanut is just that, small but healthy. She certainly is beautiful and happy. She just doesn't seem too interested in eating.
There are multiple medical causes of failure to thrive. These include:

Chromosome abnormalities such as Down syndrome and Turner syndrome
Defects in major organ systems
Problems with the endocrine system, such as thyroid hormone deficiency, growth hormone deficiency, or other hormone deficiencies
Damage to the brain or central nervous system, which may cause feeding difficulties in an infant
Heart or lung problems, which can affect how oxygen and nutrients move through the body
Anemia or other blood disorders
Gastrointestinal problems that result in malabsorption or a lack of digestive enzymes
Long-term gastroenteritis and gastroesophageal reflux (usually temporary)
Cerebral palsy
Long-term (chronic) infections
Metabolic disorders
Complications of pregnancy and low birth weight