Update

Well I have not been on this as much as I would love to be but that's because I have had my hands full with my crazy 2 year old big boy!! Scott is doing a little better with his weight finally. Scott has finally overcome his milk and soy allergy and he is doing well with eggs as long as it is just them being baked in a recipe or something. I have not yet tried giving Scott like scrambled eggs or anything. Scott is finally at the 20 pound marker and has grown over 2 inches since January and gained 2 pounds 9 ounces in 2 months!!! I am very proud of my son even though he is still not quite where he should be. Scott is not quite yet putting 2 to 3 words together yet but he is saying more and more words everyday. Scott is walking fast but not yet really running and he is still trying to get the hand of a few other gross motor skills but he sure can climb like a little monkey lol. Well other than that Scott is doing pretty good. He is on pediasure to help continue his good weight gain. He gets 4 bottles of pediasure a day and he is taking whole milk. We are still trying to get Scott off the bottle and onto a sippy cup. I'm not quite sure why exactly he is having so much trouble with this. The only other thing I can think of is because of his oral aversion. Any suggestions anyone?? Any tricks on how to get him onto the sippy?? Well that's about all for now. Take care all!!!

GREAT NEWS!!!!

So we do have some bad news but the good totally cancels it out!! Unfortunately Scott lost almost a whole pound since his last GI appt. Scott is now only at 17lbs 6 ounces. He has gotten longer/taller whatever you wanna call it... He is now 30.25 inches!! The GI reviewed Scott's allergy test results and decided to retry him with milk to see if the milk fats can help add some pounds back on to him. We had Scott on milk products all day yesterday and no reactions!!! No vomitting or diarrhea!!! I am so excited because this gives us such a wider variety of foods we can give him and hopefully he will gain some more weight from the milk fats!!! Well I do have to make this short and sweet since I have to get to work but I will be back on later tonight to post more about Scott's progress.

God Bless and I hope you all had a great holiday and have a wonderful prosperous New Year!!!

Update and Gastroenterology appointment.

Well I'm pretty sure I have not updated this yet since Scott's last big news. On Friday June 19th Mr. Scott decided he was going to give his daddy a little early fathers day present and start walking!! I couldn't be more proud of him. Looking back at everything he has accomplished and all he has been through I am so proud of him. He couldn't be more perfect in my eyes. Just to think that he has gone from being this tiny little baby inside a clear box who I could only touch and dream about holding to being this amazing smart and perfect little person. He has been through so much and accomplished so much it is just so rewarding to think I helped him through all of that. I helped teach him and support him and now he's just getting so big!! I can't believe it he's walking and talking and playing and when we are just at home and he's doing his thing and playing with his puppies or toys or whatever he feels like doing he looks so big and he is just like any other 1 1/2 year old boy. He is so amazing. The only hard time is when we take him somewhere or when we see someone we know with a baby it's so hard because they are always oh he's still so small and oh he's so tiny and it's like what do you mean he's huge!!? I don't see him as any different so why can't everyone else?? He's perfect. So what if he doesn't have the chubbiest cheeks or if he's not the tallest kid he's my little guy and he's just doing what he does best. He's just being Scott.

Even doctors say they want my son to be bigger for his gestational age. They want him to gain more weight and grow more. Well Scott is not going to be like all the other kids because he isn't all the other kids. Endocrinology told us that his bone age is that of a newborn and it is very severely delayed. This is not necessarily a bad thing because they said that it just means that he will have a longer period of time to grow and after most kids stop growing he will keep growing. I was very upset about this until it was explained to me like that. Pretty much Scott is just going to be a late bloomer. That's fine with me.

We went to go see gastroenterology on Monday. They weighed Scott and examined him. Asked us a million and one questions both the doctor and the nutritionist. They tested Scott's body fat and looked at a few other things and they said he just needs more time. He is perfectly fine. He gets plenty of calories and nutrition, he eats, and since he did just start walking it is normal for his weight to drop off a little bit since he will be burning more calories. Scott did only gain 3 ounces in the past month but again he did just start walking. I brought up the fact that his feeding and nutrition clinic had mentioned that they wanted to starting thinking about a feeding tube and he said absolutely not. He sees no reason for it since Scott is eating and drinking and getting all the nutrients and calories he needs. Boy was I relieved!! I think so far this is the best appointment we have had. We found out the test for Celiac's Disease came back totally normal so he is NOT allergic to gluten wheat and rye which makes my life easier. Also, I think this is the first appointment that Scott has had that he does not need to go for any tests, x rays, or procedures!!! Plus the nutritionist was so amazing as to give us a ton of recipes for cookies and such. So awesome of her!!!

As for the rest of us, I am still on the job hunt it's going alone slow as you all would expect. Brandon is doing good with his job at the airport and that pretty much covers us all. Well I think since both the boys (daddy and baby) are napping I am going to enjoy this quiet time for myself and relax for a bit. Thanks for always keeping us in your prayers and God Bless!!

This really touched my heart

How Preemie Moms Are Chosen

(Adapted from Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen?

Somehow,
I visualize God hovering over Earth, selecting his instruments for
propagation with great care and deliberation. As he observes, he
instructs his angels to take notes in a giant ledger. "Beth Armstrong,
son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint,
Celia. Carrie Rutledge, twins. Patron Saint... give her Gerard. He's
used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles. "A mirror will suffice."

Endocrinology results

Well Scott saw the endocrinologist and they did some tests and examined him. Well the bone age test showed that Scott's bone age is very severely delayed and that his bone age is that of a newborn. I was pretty upset when I found this out but the endocrinology nurse practitioner said that it is not necessarily a bad thing because it just gives him longer to grow. My concern was that if it still said he is a newborn then are his bones growing at all and she said yes they are but they are just delayed and they would like to see him back in like 4 to 6 months to recheck this so they know at what rate his bones are aging at and they can get a better idea at what is going on. Well I understand that there is a process and things have to be done a certain way it's just crazy because as a mom I wanna know what's wrong and what can be done now. Also I spoke with her and she said that his growth hormones are at normal levels. They are at the very low end of normal but they are still within normal range. Also he is in the 5th percentile for his weight for height but he is still off the chart for his weight and length both for his age. I asked her if in her medical opinion it would be a good idea to get a sweat test to check for cystic fibrosis since the main sign of that is poor weight gain and being small and she said absolutely. As long as we are ruling everything else out we might as well rule that out too. It is scary to think of but I just keep telling myself they are just ruling it out so we know that is not the reason for Scott's problems with the weight gain and growing and all that. The endocrinologist said she wants Scott tested for celiac's disease so we can find out if he is allergic to gluten and wheat because with all of his other allergies it is possible is allergic to that also. That would mean that he would be allergic to the gluten as well as the milk, soy, eggs, nuts, fish, and shellfish. I am going to start posting on here Scott's recipes that I find so if other people have children allergic to a lot of stuff we can share our successful recipes and hope to help each other out. Also we are being referred to a gastroenterologist to make sure that everything is ok in that department also. We just wanna make sure everything is ok and it is just that Scott is small or a "late bloomer". On my SO's side of the family I'm pretty sure they were all late bloomers. I know Brandon's 3rd grade teacher (weird I know) and she said Brandon (who is my fiance and Scott's dad) that Brandon was always the short skinny little boy in the class and she recently saw him and she could not believe that Brandon is over 6 feet tall haha. Also I know both of his brothers all the sudden just kinda sprouted up outta know where and they were always small when they were younger and then just kinda shot up. Hopefully this is what is going to happen with Scott it is just crazy to hear all the comments I get from people. I had one lady say how sweet and adorable my son was and then asked how old he was and I said he is almost a year and a half and she said oh my what is wrong with him. I understand she may not have meant it the way it sounded it was just kinda aggravating because I get this a lot. Plus the fact the my son is 17 months old and is only 15 lbs. 10 oz. and is still in 6 to 9 month clothing. Well I will let everyone know what the gastroenterologist says and I will let you know what happens. Thanks for the support and let's all just pray it is the "late bloomer" deal!!

Good News/ Crazy News

Well before I get to the crazy stuff, I would like to say that we do have good news and crazy news. We have found out that for Scott's age he is advanced in problem solving. He is doing things that he should not be doing for a few months still and is showing he is very intelligent. Scott knows how to figure things out so he can do what he wants to do without my or Brandon's help. For example; Scott LOVES to play with his walking toys. He will push them all around the house and use his walking toys to get to places and things that he wants to play with since he still is not walking alone without holding on to someone or something or cruising. If Scott hits what I call a "road block" he will go to the front of the walking toy push it backwards and turn it and go back behind it and start pushing it so that he can continue on his little adventure to get into whatever he is going after. I was very excited to find out that this is advanced as it does get old hearing about what he is behind in. I love my son very dearly it's just frustrating that doctors won't just let him be himself they want him to be like every other child out there and that is just not how Scott is. So that is my good, well awesome news.

Now for the crazy news. We took Scott to see an allergist because they wanted to be sure that since he is so sensitive to milk and soy that there isn't any other foods that Scott is allergic to because we do not want him having a serious reaction. Well they tested him for a total of 17 different things including a few indoor allergens and it was a total of 19 scratches on his back since they needed to know a positive and negative reaction and how it would look on his specific test. Well it came back that unfortunately Scott is allergic to Milk, Soy, Eggs, Nuts, Fish, and Shellfish. Also as far as the indoor allergies go Scott is also allergic to dust and dogs. Since we have two dogs I was very nervous that we would need to find a new home for the dogs. Well good news is that it is a very mild reaction and as long as we keep up with vacuuming and keeping the dogs very well groomed and also get a HEPA air filter for both Scott's room and the main living room area we should be fine. The only downside is that these filters are not cheap so getting them right away is out of the question so we are saving for them and should be able to get them in the next few weeks. Also they suggested keeping the number of stuffed animals in Scott's room down to a minimum since these too collect dust mites which grow off of dead skin cells. So we are in the process of packing up a lot of Scott's stuffed animals since he has like a million of them and keeping them in vacuum sealed bags so they will stay nice and we can show Scott all of the little buddies people bought him while he was in the NICU to help him get better and stronger for when he came home with us. Lastly the doctor suggested keeping the dogs out of Scott's room to keep the pet dander down but since we have already taught them not to go in Scott's room since we moved here that was easy enough for us.

So now the adventurous part that everyone can help in. We are trying to put together a special cook book for foods for Scott. It can be any kind of food whether it is something that he will eat now or something he can eat once he gets a little bit older we are trying to collect some dairy free, soy, free, egg free, nut free, fish and shellfish free recipes. If you have any recipes for us please e-mail them to me at hollypalmer1@aol.com with your name and where you are from and we will put them in Scott's cookbook and show him how many people have helped us and supported us through everything. It will be greatly appreciated and I think it would be nice to show him when he gets older how many people care about him and helped us all out.

I also do have a special request this time. I follow a blog for a little girl who is only 10 months old and has been through so much. Her name is Kayleigh Anne Freeman. I have mentioned her and her family before in previous posts I do believe but I really am asking for some help this time around. This poor little girl had a few surgical procedures done recently so that she could finally go home to her family from the NICU after being there for 10 months. Unfortunately something went terribly wrong during the procedure and she is now brain dead. I am asking for you all to read her blog and her story and please just keep her in your prayers. This family is not only going through this terrible tragedy with their daughter but they have already lost one of their cars and are facing foreclosure and losing their second car which gets them to the hospital to see their sweet angel. They have to other children at home and are struggling to keep their realty business their health insurance and everything up so they still have some kind of income in this time of economical crisis. Please help pray for this family and if at all possible even just $5 will help if you can donate to this amazing family. They are some of the strongest people I have ever met and are just plain amazing. Please at least just keep this little miracle from God in your prayers!! You can check our the story here of this little girl who was born at just 28 weeks and doctors said she would never even make it this far but now she is 10 months old and fighting for her life. Please pray for this family!! http://www.kayleighannefreeman.blogspot.com/

Thanks again and God Bless

Holly

Finally some results

We finally heard from the geneticist yesterday that two of three of Scott's tests came back normal. Well the one that tells us about his size was not able to be analyzed because he was actually too young to have that test done. The test to make sure all his chromosomes were ok came back normal. We are now waiting for one other test to come back and we should know those results in the next two weeks hopefully. Scott is getting the hang of walking pretty quickly. He holds on to anything and everything and has learned how to get around pretty good. He likes to push his tractor around the house and use it as his little car. It's so funny watching him walk because he still is pretty small. Scott is starting to eat a lot more table foods and hopefully that will help with the weight gain and growth issues. Last time Scott was measured he was 15 lbs. and 26 1/4 inchess tall. Still pretty small but I'll take it. We are right now trying to find a really good recipe for a milk free soy free ice cream and we do not have an ice cream maker so if anyone has a good recipe feel free to share and hopefully sometimes we can give Scott a yummy treat. Well take care and sorry I don't get to update too often it's been really busy lately!! God Bless