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!!
Wednesday, July 1, 2009
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."
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."
Tuesday, June 9, 2009
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!!
Friday, May 1, 2009
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
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
Wednesday, March 25, 2009
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
Sunday, March 15, 2009
Good News
Well sorry it has taken so long to update this but I have been really busy with work. Recently Scott gained a pound and a half in the past two months!! This is really great for him as he was only gaining an average of half a pound a month!! He is doing a lot better with his oral texture sensitivity and is eating a lot more table food. Also they decided since Scott is over a year old he no longer needs to be on an infant formula but due to his milk and soy allergies he is on a one year and older formula which is hypoallergenic and is prescription only. It is called Elecare and it is great because it is 30 calories per ounce which I'm sure is also helping with the weight gain. We are still waiting to hear back from his genetics testing but I guess no news is good news right?? Scott is due to see an allergist on April 21st. It sounds so far away but it is the soonest appointment we could get when I will be able to make it with my crazy work schedule. Brandon finally got a good full time job after being laid off four times so things around the house are getting a lot better too. Not quite as stressful although we are still trying to get caught up with a few things. Well I hope this weight gain keeps up as Scott seems to be doing so well right now. All we have to hope for is that his fine motor skills keep improving. He is doing better with the eating it is just the small things like the pincher grip and stuff like that that we have to work on. He still wants to grab everything with his fist instead of using his thumb and first finger. Well hope everyone has a good week and I will try to update you all sooner!! God Bless
Thursday, February 12, 2009
Good News
Well Scott had his feeding and nutrition appointment today and since january 9th he has gained almost a pound and a half if the scale is correct!! That takes him up to 14 lbs. 2.5 oz.!!!! They referred us to a new formula and some tips to get him to eat better and help with digestion. He will be seeing an allergist and the feeding and nutrition clinic will talk with his primary doc to see if a gastroenterologist will be necessary since he should be gaining a lot more and a lot quicker considering the amount of calories he gets a day. Well that is my update and good news. I will update whenever i get any results back from genetics!! Thanks for the support and keep the prayers coming they are obviously working!!!!
Monday, February 9, 2009
Virtual Baby Shower
Go to 
for the best virtual baby shower ever. You can also donate to two very amazing babies who really need our help. This is an amazing cause and everyone should defintely check it out!!!!
Thanks
Holly
for the best virtual baby shower ever. You can also donate to two very amazing babies who really need our help. This is an amazing cause and everyone should defintely check it out!!!!Thanks
Holly
Sunday, February 8, 2009
Geneticist
Well we had Scott's genetics appointment. Everything went well. She took some measurements like the trunk to crown and she measured his finger for some reason. They said it could take up to 5 weeks to get all the tests back. They did tell us though that if anything comes back abnormal they will notify us immediately otherwise no news is good news and we will just have to wait it out. Well sorry it took so long to post this. His appointment was the 3rd and I am just now posting but I have been super busy and Scott has been a handful lately. Everything else is going ok. Well just please keep us in your prayers and hope they figure out what is going on and hope it is nothing too bad. Well thanks for all your support and prayers. They are much needed and much appreciated.
Thursday, January 15, 2009
From the beginning
Well since I am starting this kinda late in the game let me get you all up to speed. When I was pregnant with Scott I got very ill and was diagnosed with severe preeclampsia and HELLP Syndrome. These two illnesses can both be very serious and are life threatening. I was induced at 32 weeks due to the severity of both diseases and to avoid me having seizures and strokes while pregnant. Scott was in the NICU at MetroHealth Medical Center which is a level 1 trauma center for 46 days. I had to be delivered at a level 1 due to the complications I was having because other hospitals wouldn't have the tecnology to deliver me. The most difficult thing was not being able to drive for 6 weeks because I was still at risk for seizures and strokes from the PE and HELLP and since Scott was in the NICU I had to have someone else drive me to the hospital every time I wanted to see my dear son. It was very hard not to be able to just go to see my son whenever I wanted and having to rely on other people to be able to go see him. Finally the same day as my 6 weeks check up Scott came home and this was the happiest day of my life. I finally had my angel home. Scott had many obstacles he had overcame and I was so proud. He came off the ventilator after only 1 day. He went from a nasal canula to a CPAP and back to a nasal canula. He was on a feeding tube for what seemed like forever though because he didn't do to well with the eating it was too tiring for him. He was unfortunately still dealing with a reflux problem and trying to find out which formula would be best for him due to his allergy to milk and soy both though. So anyways, Scott came home on an apnea monitor which he was on until April. After coming off the monitor everything seemed great. When Scott was 5 months old we found out that what we thought was an undescended testicle ended up being a right inguinal hernia. So Scott had surgery to fix this problem in the beginning of June. Everything since has been fine. The only thing Scott was still battling was his slow weight gain. We had him on a 24 calorie per ounce diet with the formula versus a 20 calorie per ounce diet and we were feeding him whenever he acted hungry. He has been getting 40 or more ounces of formula a day. Well unfortunately we got some really bad news at his 12 month check up. Scott had only gained 10 ounces in 2 months. He was gaining atleast a pound a month so this is a huge drop for him. We are now being referred to a geneticist, endocrinologist, and a metabolist to find out if there is anything wrong with Scott genetically, or if he has a thyroid problem or an overactive metabolism. I am asking anyone and everyone to please pray for my little boy to not have any major problems. I am hoping it is something simple such as an overactive metabolism because that is something that can easily be treated. Thanks for all your help and support!!!!
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