Today the scale says nineteen pounds. Again. Our little girl is not growing. When we came home from the Ukraine she gained four pounds fast. But in the last six or seven weeks, there has been nothing. She’s actually lost a pound. She eats pretty well-but still no growth.
Some have recommended growth hormones. But I’m not sure about that. It just doesn’t feel right. But we have not researched it, so I’m completely ignorant on stuff like that.
I actually ache for her when I look at her tiny little body and remind myself that she is not a baby, but a five year old.
Trying to make the best decisions for our teeny little angel. Some days I wish the answers would be easier to find.
So thankful that she is right here with us. How blessed we are.
We adore you, honey girl.
Hi
Im not a expert, but she moves a lot more than when she was just home.
Maybe she burns of her calories?!
Grace
Sweet picture. Is she standing against something there? Thank you for paving some of the road about these tiny ones! I wonder why she is slow too! Maybe she has slowed in weight because she is more active? Have you tried to track her height?
How blessed indeed. Praying for you!
Don’t worry, feeding growth hormones to my child would make me very uneasy. Have you spoken to a doctor? Also are you keeping track of her length? Cause what if she isn’t gaining weight, but maybe growing length wise? I know she looks soooo tiny! I will pray for her and for you, good luck!
Kasey
She’s so sweet! I love watching her blossom on your blog! Perhaps she’s just plateaued and the weight gain will just be more gradual?
From a parent who’s child has been on growth hormone therapy, it WILL NOT help your child UNLESS your child is growth hormone deficient. (The Magic Foundation is a good place to find information, but I don’t think that’s your answer. Your answer is the fact your child has suffered severe institutional neglect.) It takes MONTHS of testing to get that diagnosis. Kids with DS often do not follow a typical growth curve, especially when their systems have been messed up by severe neglect. Has her HEIGHT increased in those weeks she hasn’t gained weight? If her height has increased, then she is growing, just in a different direction! Remember, she just gained several months worth of weight in a matter of WEEKS, she is GOING to have some plateaus, or her height will catch up to her weight gain, then she’ll gain weight again. There ARE a lot of kids with DS who are not the “chubby” kid with DS. They are the “skinny, hard to gain weight” kids with DS. My daughter was one of them until she was 9! Until that time we struggled to get her to gain every ounce she had. At 9, she only weighted 45 pounds, and was the size of your typical 5 year old. Then we had to add a seizure med, which caused her to very rapidly gain 45 pounds, which was awful to watch. Now at 14 she’s has just lost 30 pounds and is a lovely 99 pounds on her 4 ft 9 inch frame. She is done growing. She stopped 2 years ago, and she is an average height for a young lady with DS.
maybe there is another reason that she isn’t growing. Thyroid can cause this as well as some other things. She is so beautiful. I have wanted to adopt for years but, my husband isn’t ready. I have prayed every day to soften his heart and I have seen little miracles, one being that I was able to share your story with him and I showed him how adoption has changed lives. He was not bitter and he even asked questions. so, thankyou for sharing your experiences
Are you sure she is five? Can the orphanage have had it wrong?
You should have a bone age scan done of her wrist- that way you will know her skeletal age.
My youngest was so tiny- he looked like a baby when he started school.
The doctor ordered a bone age scan and it showed he had a bone age of a younger child. They usually catch up after puberty- He is finally growing and is almost 16!
(he is now 5’6″ and still growing)
Your kids are beautiful!
Oh, I do not like puzzles…hoping all the pieces fall into place for you so that you can see the picture of what she may need. One thing for sure: She is not lacking for love, and that’s a very good thing!!
Hello Dear Lady,
One word for you “patience”! Your daughter has grown so much in just 4 months! We don’t see her everyday like you do but when we get to see the pictures of her we see “AMAZING CHANGES”! She has grown….give her time! The Lord has already done amazing things in this little girls life and as well to all of her little sisters! She is growing from the love you guys have showered her with! Just like the one daughter who may not speak she may not grow that will be upto GOD’s timing! Oh that word “God’s Timing!” I love all of her hair that has grown! So be “patience”… I love reading your blogs!!! Blessings to you all!
We actually see a nutritionist twice a month for our little girl (she’ll be two in a couple weeks and just hit over 18 lbs). I would speak to a nutritionist before I went with hormones. We love ours and she is all about doing it naturally versus with meds and suppliments and hormones.
Aubrey eats well too, but she doesn’t seem to be getting the CALORIES that she needed. We choose better now, getting more calories for smaller amounts. We do yogurt (try greek or mediteranian for even more calories per small serving), avocados, baby oatmeal, hummus and cottage cheese and whole milk. She hasn’t gained a ton, but is steadily growing and gaining and that is improvement over not gaining or going backwards!
It could be that she is more active now than when you first brought her home too and that she is burning what she is taking in.
Good luck!
She still looks SO HEALTHY compared to being in the U! She is so beautiful and precious! I see so much in her sweet eyes~
it is hard not being able to “fix” them, to make them gain the weight, ect.
she is healthier than she was though, happier than she was…that is very important. you guys have done good
I am not a health expert, but have had some experience with failure to thrive. In both cases, it was because the body was not digesting the food correctly.
One of my son’s had an allergic reaction to a certain food that caused his body to produce mucus in the intestines, so that no matter how much he ate, he got nothing out of it. Once we removed that food from his diet, he recovered and began to grow normally.
The second case was our new dog. (Yeah, I know, and animal, not a person. I truly hope you are not insulted!) We adopted him from the shelter, and he was extremely underweight, despite their having fed him well for two months. Our vet recommended feeding him some yogurt, to help restore his systems, and it worked. He finally began properly processing his food.
We are facing the same thing with Ethan. He’s been home 7 months and has barely gained 1 pound. Nobody seems concerned about it yet. But I am. He’s 22 months old and the size of a 6-9 month old. Hopefully after his palate surgery we’ll start to see weight gain. If not, then we’ll have to discuss with the doctors. Praying for you guys too as you try to figure out the weight issues. Love you!
Hasn’t she been more active? That could be the reason for no change in her weight.
I think that it’s important to remember that her activity level is much higher now than when she was in the Ukraine…so eating more doesn’t necessarily = weight gain. Rest in the Lord for a bit before considering growth hormones. Everything has a risk. I have never commented before but I just love your blog and your heart for Jesus!
God Bless,
Angie
It’s so hard when it’s like that. We adopted our daughter from an orphanage at 2 and she was also tiny. She has taken a long time to grow, and is still very small (she’s about to be 5, but people still regularly think she’s 3). It is worrying when you know they need to grow but they just don’t-have you had her tested for parasites? We’ll keep you guys in our prayers for wisdom! Angie
I have been following your story for a couple of months now. Over a year ago I heard about Reece’s Rainbow and ever since I feel led to adopt special needs children. My cousin has the magical chromosom as well and she is the sunshine of our lives!
I would like to just tell you, that it might take some time for her to gain weight. I have had weight problems ever since I was about 14. When I dont feel good I stop eating and it goes on for a while. I loose a lot of weight really fast. Gaining it back takes me forever. With me it is my stomach that seems to shrink and it takes time for it to get used to more and more food. I think it is normal, that it is sooo much harder for skinny people to gain weight. I am sure she will gain a bunch of pounds in the following years, but she will gain them in her pace and since she is getting so much love and all the nutrition she needs, she will be just fine. She looks sooooo much healthier already. She is such a little beauty. Just keep loving on them, God will do the rest.
Have a blessed weekend!
Greetings from Germany!
It’s the same with our Artiom, when we brought him home he was at 23 pounds, at 5 1/2 yrs old.
He gained almost 4 pounds rather quickly then stopped. He’s been home from April and still sitting at 26-27 pounds. Of course, he’ll only eat rice cereal, but we do mix it with pediasure and sometimes syrup. But still, no weight gain. The GI doctor has mentioned a G-tube, but I just don’t like that idea.
Plus he has Goldenhar, and they tend to be smaller in general, but he’s going to be 6 next week and he’s smaller than my 3 yr old.
Anyway, Haillee is just as beautiful as can be.
She looks SO much healthier, you can’t even believe its the same girl!
Praying with you Anthony and Adeye!
Hugs and much love!
She is one precious tiny tiny angel!
Love,
Jill
I know there’s a point in a toddler’s growth where they don’t put on any weight, but they sort of stretch out and start being built like little kids rather than babies. Could this be what’s happening with Hailee? She looks much older to me than she did when you brought her home, as if she’s catching up slowly to her calendar age.
I know there’s a point in a toddler’s growth where they don’t put on any weight, but they sort of stretch out and start being built like little kids rather than babies. Could this be what’s happening with Hailee? She looks much older to me than she did when you brought her home, as if she’s catching up slowly to her calendar age.
I pray that the Lord will give you both wisdom and heal Hailee’s body.
Is Harper doing okay?
Michelle
Hi Adeye,
I put Kate on high calorie everything when we got her home. One thing that really packed on the pounds for her was the Yo Baby drinkable yogurt. Just a thought…
Lisa
Praying!
I was concerned about Isabel gaining weight, too. Another adoptive mom told me that their pediatrician said that often newly-adopted kids are working so hard to grow and learn in other areas (social, mental, emotional) that weight gain is the last thing on their body’s to-do list. Not sure if it’s the case for your daughter, but just some food for thought.
I don’t know how I feel about this because I don’t like processed foods and I haven’t looked at the ingredients but… Our pediatric developmentalist recommended Pediatric Boost when she heard about us adopting our boys. She says it has a lot of calories and will help to put weight on. I don’t know if you have already tried this but I thought I would share. Hailee is gorgeous whatever her size!
What does her doctor say about it?
Poly-joule is a pure carbohydrate. this is what we used for Aden and many peads here suggest. Aden gained with this I’d give it a go before anything else.
http://cincottachemist.com.au/product/514578-buy-poly-joule-powder-900g-online
That must be so frustrating.
It doesn’t make sense, does it, if she is eating well? We will be praying that your sweet little one will start putting on the pounds!
Hello. I cannot remember if you already shared this or not — have the Cardiologists confirmed if there are any issues with Hailee’s heart? We adopted a 2 year old (very tiny and underweight) sweetheart from China who also just ate and ate, but could gain no weight. We were worried about parasites, etc…. but it turned out her poor little heart was just being so overworked that it was not allowing any weight gain to occur. In just one month after her successful heart surgery (repair PDA) she gained 5 lbs and she’s been growing beautifully ever since.
Hello. I cannot remember if you already shared this or not — have the Cardiologists confirmed if there are any issues with Hailee’s heart? We adopted a 2 year old (very tiny and underweight) sweetheart from China who also just ate and ate, but could gain no weight. We were worried about parasites, etc…. but it turned out her poor little heart was just being so overworked that it was not allowing any weight gain to occur. In just one month after her successful heart surgery (repair PDA) she gained 5 lbs and she’s been growing beautifully ever since.
Adeye - she may grow in “fits & spurts”, and inside she is positively growing! Try a lot of butter and high fat foods as well - and maybe some caloric supplementation -
praying for her to grow baby grow!
HI! I have emailed you but you didnt respond so I tought I’d comment here
I am new to your blog, suggested by Mattie Patterson. Those girls are so precious! My godson Oscar is 2 and has ds, its such a blessing right 
Can’t wait to get to know you more, feel free to email me…
[email protected]
Thanks xx
How about her heart? I hear that children with heart conditions sometimes fail to gain weight because the heart is working so hard. You may have already mentioned this but I don’t remember. She sure is blossoming despite not gaining anymore weight! LOVE her face!
I am a doctor and have a child with endocrine issues. It is far too soon to tell what is going on with Hailee. Most of the comments talking about post institutionalized children and development are on the right track. At this point you are focusing most on health. Start with is she continuing to become more alert, try new experiences, eat reasonably well, gain in strength? As long as these things are going on, then she is oaky. Focus less on physical growth. The body protects the brain so when a child is malnourished, weight gain slows first, then height and head circumference last. She seems to have put on the weight she needed to make her height/weight more proportional. IN her photos she looks like a healthy 12 months old. I realize she is 5 but previous she looked like a starved 12 month old.
By all means, have her seen in a growth clinic, preferably one that focused on DS kids. Have her weight and measured by them every 6 months or whatever they suggest. what you will look for after a few months home and catch up, is whether she finds a curve on the growth charts and follows it. Those 5 years cannot be erased. She may never grow the way she might have otherwise. There is no rush for growth hormone. Even at 5, she has some years of growth yet and there is plenty of time for that if need be. A bone age does not tell you the age of the child- it tells you the “age” of the bones, essentially how much growth potential is left. Keep an eye on things but just enjoy her. She is clearly developing at a rapid rate. The body and brain cannot focus on everything at once.
Ellen
I’ll be praying for Hailee to gain weight! Maybe I need to come up there and cook some authentic Italian food for her. It sure works for me (putting on the weight that is).
Just read through the other comments and totally agree with everything said there! her activity level, the fact that she put on a bunch of weight in a hurry, that she could be growing, that her heart could be using up extra calories to work, her gut being screwed up and needing some good bacteria in it, her thyroid etc etc! Also-kids with ds often have issues with their bodies metabolising the food properly, often some enzymes really help(among other stuff!) I would talk to a good naturopath and or a nutritionist or someone like that, but I wouldn’t stress too much, and i certainly wouldn’t go with growth hormones, unless down the track there was an identified need for them.
Good luck, dear A and A! My heart is sore for dear Hailee. I hope that her current issue is what many have mentioned — just adjustment issues, movement, etc. But it also makes me think about celiac disease or heart issues. There are many parents of children w/DS in Richmond area who have dealt with both if you want referrals. Let me know. HUGS and prayers!!
How interesting that I was just now coming to your blog for some advice on getting my new son to gain some weight!
We just got home from EE yesterday! This morning I started Theo on fish oil and high calorie baby formula, though he is already 4 years old. I figure if he looks like a baby then I should feed him like one.
I’m just so worried that he doesn’t have any reserve. If he catches a cold it could be very bad.
I guess we are in the same boat, huh?
We are right there with you on the weight gain. Daisy was 17 pounds when she came home at 5 and a half. Today, almost a year since being home, she currently weights 25 pounds. She has hit the place where no matter how much she eats, she still isn’t gaining weight. She’s 6, 25 pounds and is only 3 feet tall. it’s heartbreaking.
You have to remember…she was in a crib all of her life, now she is mobile and burning many more calories. Do you have her on a high calorie supplement? If not, thats a thought…she is beautiful tho, no matter how small she is!
Adeye, Lizzie has growth issues as well. We took her to a Ped Ortho doc. You might want to start there but I would wait. She is more active - much more active and just because she is not gaining weight doesn’t mean she is not growing. Has she gained inches? That is what the ortho doc was most interested in. I would hold of on even thinking about GH therapy right now. You could request a bone age scan. That is just an xray and it told us that Lizzie’s bone age is a year behind which means she is still catching up. Hailey was institutionalized longer than Lizzie was so I would imagine it would take her longer to catch up!! She looks healthy and beautiful!!
First of all Kasey (4th comment), growth hormones are administered by a subcutaneous injection. They are not administered orally.
Leah (6th comment), you need to read the Russell Silver Syndrome and Small for Gestational Age sections from the Magic Foundation site. These kids DO benefit from Growth Hormones therapy because they are GH inefficient, that means their bodies produce a normal amount of GH but for an unknown reason it is not processed adequately.
For the rest of people that look at GH therapy like a wrong thing to do, let me tell you something, ignorance can lead to misconceptions. GH therapy benefits children with many syndromes and it is not only on the height, for example: it helps with low muscle tone, increases appetite, regulate blood glucose levels, decrease the higher risks of developing high blood pressure and diabetes II later in life in SGA kids. GH therapy cures failure to thrive too.
If any of you that disagrees with the GH therapy had a kid that is not reaching his milestones, like not able to sit down unsupported at one year, not even crawling or walking at two, not ever in his life being hungry and if eating, only small amounts that are not able to sustain his life, if being continuously hypoglycemic could cause brain damage and developmental delays I’m pretty sure you would consider GH therapy for your child. Many children on GH therapy learn to sit, crawl, walk, eat, talk and live a “normal” life and if one extra benefit is reaching your height potential, that doesn’t sound inappropriate at all to me.
Not every child qualifies to receive GH therapy, is not like I want my child grow taller and let’s put him on GH. The FDA approved the use of GH in children born SGA and that have not caught up by age 2, it is not approved for cosmetic reasons only. This therapy is too expensive and regular folks will be unable to pay for it long term.
I’m not saying that GH therapy is for everybody. It is a personal choice, like having blood transfusions or being an organ donor. But it is a life changing decision that requires a lot of commitment and perseverance.
Adeye, I would recommend that whenever you are ready, get at least a couple of Endo opinions regarding the use of GH in DS children. As in everything there are the ones that approve and the ones who disapprove, but in the end the decision is yours only who wish the best quality of life for Hailee.
Here is link to some abstracts http://www.riverbendds.org/index.htm?page=ghab.html
Good luck.
First of all Kasey (4th comment), growth hormones are administered by a subcutaneous injection. They are not administered orally.
Leah (6th comment), you need to read the Russell Silver Syndrome and Small for Gestational Age sections from the Magic Foundation site. These kids DO benefit from Growth Hormones therapy because they are GH inefficient, that means their bodies produce a normal amount of GH but for an unknown reason it is not processed adequately.
For the rest of people that look at GH therapy like a wrong thing to do, let me tell you something, ignorance can lead to misconceptions. GH therapy benefits children with many syndromes and it is not only on the height, for example: it helps with low muscle tone, increases appetite, regulate blood glucose levels, decrease the higher risks of developing high blood pressure and diabetes II later in life in SGA kids. GH therapy cures failure to thrive too.
If any of you that disagrees with the GH therapy had a kid that is not reaching his milestones, like not able to sit down unsupported at one year, not even crawling or walking at two, not ever in his life being hungry and if eating, only small amounts that are not able to sustain his life, if being continuously hypoglycemic could cause brain damage and developmental delays I’m pretty sure you would consider GH therapy for your child. Many children on GH therapy learn to sit, crawl, walk, eat, talk and live a “normal” life and if one extra benefit is reaching your height potential, that doesn’t sound inappropriate at all to me.
Not every child qualifies to receive GH therapy, is not like I want my child grow taller and let’s put him on GH. The FDA approved the use of GH in children born SGA and that have not caught up by age 2, it is not approved for cosmetic reasons only. This therapy is too expensive and regular folks will be unable to pay for it long term.
I’m not saying that GH therapy is for everybody. It is a personal choice, like having blood transfusions or being an organ donor. But it is a life changing decision that requires a lot of commitment and perseverance.
Adeye, I would recommend that whenever you are ready, get at least a couple of Endo opinions regarding the use of GH in DS children. As in everything there are the ones that approve and the ones who disapprove, but in the end the decision is yours only who wish the best quality of life for Hailee.
Here is link to some abstracts http://www.riverbendds.org/index.htm?page=ghab.html
Good luck.
Adeye — my daughter was adopted at age 2 — weighing 16lbs. She has been home 4.5 years now and is 6.5 and weighs 29lbs. I feel your pain. It drives me crazy that she is so tiny. Her little body just can’t catch up.
When Mylie’s heart was working so hard before her surgery, she eventually got to a place where she quit gaining weight too. That was one of the signs that let the doctors and us know that it was time to do the surgery. After that, it has never been an issue again.
Also, just today, I was at my health food store researching something for my daughter and I came across information about children with Down syndrome who have trouble breaking down and digesting food. There are natural supplements to remedy that. Don’t know if anything like that may be an issue. I found the gals at our store to be so helpful and kind to help us find out things and learn. AND the best part, they are never pushy for us to buy sopmething. They are just genuinely helpful.
On another note, she does look so much older than just a few short months ago - at least in her pictures. Does she look older to you too? What a change we have seen! She really looked quite infant-like when you brought her home, but now she looks like a child! Wow!
We will be praying that you and your husband have wisdom to know the best route to pursue for her health. That is always such a heart-wrenching thing, isn’t it?!
Some things about Growth Hormone Therapy I didn’t have a chance to mention in my earlier reply. 1) it’s a daily INJECTION. It is not a pill or oral liquid. It is a shot, just like giving insulin. 2) the testing to determine growth hormone deficiency…unless there is is new testing that I am not aware of…is NOT FUN, and is incredibly expensive, and difficult to get insurance companies to pay for. 3) For a child who is deficient, growth hormone therapy is NECESSARY! Growth hormone affects more than just growth. If affects the entire metabolic system, how fats are metabolized, how muscle mass is produced, etc. It is IMPORTANT to the body. But, the treatment is expensive, running anywhere from $4500-$6000 per month, and that doesn’t include the supplies needed to give the injections. Often insurance companies will only approve 6 months at a time, and if no growth is seen (meaning no benefit) the will not pay for any more. Sadly, some kids don’t grow in the first 6 months of therapy, and won’t grown until 6-9 months. My son was lucky and started growing right away. He hadn’t grown even 1/2 inch in the 3 years prior to starting therapy, but in the first 3 months of therapy he gained 2 inches.
Adeye-she is absolutely beautiful and precious, I share your photos, especially those of Hailee with my close family and friends and my husband. I share Hailee’s progress and development with Kallne’s OT and PT on almost every visit. She is surely changing our attitudes about children that experienced such neglect and the way a loving family and GOD can change that.
I also agree with the fact that she is sooooooo more active> I can remember in one of your first post after meating her, you said she couldn’t even sit for longer periods of time and got tired very easily.
Pediasure is working for us. It aslo helps that it’s packed with vitamins-we struggle to get that into Kallen, but he LOVES Pediasure. If Hailee doesn’t like the taste, you can at least give it to your other kids, so it won’t go to waste.
I know that God is going to lead you in the right direction and impress on your heart what would be right for Haillee.
Growth Hormones - Discuss with your pediatrician. Our dd was and is small. Now just turned 6 she is 42-inches and 40 lbs. At age 2 or 3 her growth hormone was tested and was abnormal. The recommendation was that if it continued to be abnormal at age 5, she should get growth hormone. If it resolved and her growth was slow but consistent - no hormones. Her last growth hormone test was within normal ranges and she continues to grow at 3rd percentile. She will probably just be tiny. Adopted 16 mos, Guangxi, PRC.
I am not sure that Growth Hormones would be appropriate for either one of your little ones. They are small because they were in an orphanage and not because they do not produce enough growth hormones from from the pituitary gland. They were not fed properly and did not get the medical attention they needed, this is why they are small and sorry but GH is not going to help with that.
Honestly I think she is looking really good. I understand you want her to grow and get big but remember it is not going to happen as fast as we wish it would. Basically she really is just a baby (I do not know if you know this but after being in US for six months you can reapopt them and change their birthdates. A lot of people do this so that the date matches more to the childs real ability. Of course you might want to wait a year or so and see how much they progress before you do that though.)
I am sure she is moving and playing so much more than she did in the orphanage and therefore she could be burning up calories. I would think putting her on baby formula, pediasure, or something to help get tons of calories in her would do so much more for her than the GH.
You may want to get both of them into a Down Syndrome Clinic to have them checked out and also get the proper medical care. Talk to your Pediatrician about getting into one.
Love,
Sheila
She’s so cute….could she have a parasite? I know hp pilori is very common in our kids coming home from Eastern Europe. Bethany, Meredith, and I think someone else went through that with their kiddos. ???
Reese hasn’t gained since coming home, but has had three major surgeries and is 100 times more active than she was in her crib in Ukraine. If Reese had a heart issue and was as malnourished as sweet Hailey when she came home, though I would be concerned.
Oh Adeye I am sorry! It is so hard being a mama. My biological 10 month old daughter just had a bunch of bloodwork done to see why she isn’t gaining weight. I’m trying not to worry, but, it’s hard.
I’d imagine that your sweet girls are MUCH more active now than they were before, which can definitely make a difference. She is so incredibly precious!! Keep hanging in there. You are doing an amazing job.
Hi,
Joshua is 5 and he was 30 pounds for almost a year and a half, but he did get taller… he looked healthy and was active so the doctor was not worried.. Then we had a sleep study done,and he had sleep apnea, which causes them to burn a ton of calories because they are sleep deprived. Then we had his tonsils and adnoid out to remove the obstruction, and he is sleeping better and has gained 7 pounds. I know 19 in small for her age, but definately check to see if she has gotten taller. Our kiddos are usually not very tall anyway! She is just precous, all your children are beautiful!
Anne
mom to Joshua, DS
Colorado
Hi Adeye! I didn’t read through the MANY comments, so I don’t know if Celiac Disease was mentioned. I do know that it is common with DS. I was diagnosed with it about 2 years ago and have done a lot of research on it.
In normal small intestinal linings there are little “hair-like” projectiles called “Villi”. The villi pull the nutrients into the blood stream. With CD, there are no villi. It is destroyed by gluten and therefore causes malnutrition. The body simply cannot absorb the important nutrients/vitamins/etc that our body needs to grow and be healthy.
I had been told MANY times in the past that I was “malnourished”, which seemed crazy if you look at me!! But, I consistently had my “Albumin” level come back at Zero. I was, in fact VERY malnourished. I also was always severely anemic and had no immune system. Oddly enough, NO doctor ever diagnosed it or even tested me for it. It was when I had my 1st colonoscopy : ( that the Gastroenterologist commented on my abdomen be so large (again : ( …and did an endoscopy and a biopsy of my sm. intestine and found that I DO have CD!
It is an Auto-Immune disease and untreated can lead to some even more serious illness.
So…ALL of that to suggest that you mention to her doctor (if you haven’t already). In the mean time, try taking away all gluten. Just Go*gle CD OR Celiac Sprue and check out the foods that you need to take away. If she seems to respond positively in any way, then you are probably on to something.
http://www.clubceliac.com/celiacsprue.htm
Hope that gives you some new ideas! I will continue to Pray for that darling girl! She really IS looking 100% better than when you brought her home!! Give ALL of your Precious Angels a big HUG from me! And, consider yourself Hugged, as well!! Love ~ Jo
Adeye - You have gotten wonderful advice from everyone else, please take it to heart and know that we are all thinking of that sweet girl of yours!
She is so beautiful! It sounds as though you’ve gotten some wonderful advice and help through blogging friends. I’m hoping it will help!
Thank you for sharing your life with us…I have been so inspired. A friend forwarded your site a few weeks ago with the information about the little boy who needed a family. Wow-I wanted to hop on a plane the next day!!! His picture reminded me of my daughters. I can totally relate to the growth challenge…my 6 and a half year old weighs around 19 pounds and my one year old around 10 pounds. They are both on feeding tubes, but have still failed to gain much. Sometimes I get so tired of people saying…”she’s sooo tiny!” I feel like saying..”SOO?” I loved your post on celebrating imperfections…so right on, and something I’ve thought about so much since. The gift of life is truly one worth celebrating! God’s best to you as you embrace the challenges and joys that come along with your beautiful family!
Jenny
Sweet lady - I’m not a doctor or anything like that - just a dad of an adopted FTT daughter. Our third adopted child - at age 2 - is the size of our 4 year old FTT daughter.
One thing I’ve noticed is that our daughter - who at 18 months functioned at about a 6 month old age - grows….but has what we’ve come to call ‘rest periods’ inbetween growth spurts.
Based simply on observation of one case (and a big bunch of “Worried dad prayer”) no means is this a ‘medcial certanty’ - She’ll catch up - but her body needs to adjust to her growth. 4 pounds in a child her size is what - about a 30% growth increase? Her body (bones, muscles, circulatory system etc) needs to ‘catch up’ to that sudden increase in mass. It will - but in the meantime her body just ‘knows’ it can’t add any more mass to the systems. It will know when it’s ‘safe’ to grow some more.
I mean - come on - the human body is evidence in the real world of God’s ability to turn nothing into something - complete with ‘failsafes’ built in!
Prayers - and a bunch of hugs -
aus and co.
I read you post and looked over at my sweet 10 month old daughter ~ who is the same size as precious Hailee. I can understand why you’d be concerned! Sounds like your commenters have given you a bunch of ideas to explore… What a blessing. In the end, rest in the hope that God is in control. Prayer is the best medicine, and Hailee has mine.
Missing you guys and dreamed about you all last night! Hope you are getting settled in but we can still miss you all like crazy, right?
Love,
Marijo
hi there, I just wanted to share that my now 12 yr old daughter, who also has DS, weighed in at a whopping 25 pounds soaking wet at 5 and even 6 yrs old. She was TINY. She is making up for it somewhat now, as we are having to watch her weight. But, she was very healthy and just small…it can be very common for little ones with DS to be extremely petite at that age. Some for sure is coming from her humble beginnings, but some may just be normal, too. Try not to worry too much, if she is eating. and..this may sound crazy, so forgive me…but….our daughter LOVED pepsi and still does. And doc said there was no harm in letting her have some now and then, it is high calorie and she may like it. Sounds nutty…but caffeine has been proven to be beneficial to little brains with DS, too.
She’s such a cutie :)! And she has made so much progress, even if she hasn’t grown for a few weeks. But, she needs to grow more obviously :)!
Have you considered any kind of nutritional deficiency? Like zinc or iron? Both of those play KEY roles in growth and they have been found to very often be low in individuals with DS. My little brother with DS is in that range . . . if he doesn’t take about 35mg/day of zinc he’ll be deficient (he’s 5 1/2). We found this out when he was about 8 months old and believe, it changed him SO much. We also give him Nutrivene-D, which is targeted to meet the specific nutrient requirements of T21, but we still have to supplement 25mg of extra zinc or else he’s got problems ;).
It most certainly wouldn’t surprise me if miss Hailee was deficient in any number of nutrients, since her life was so poor before coming home. Nutrient deficiencies can wreak havoc on anybody.
Here’s the link to how Nutrivene-D helped Osiyyah so much - http://gotdownsyndrome.blogspot.com/2010/01/nutrivene-d-what-we-saw.html. It’s a controversial topic for some reason, but just thought I’d give it to you as at least an FYI and another thing to think about for your little sweetie pie :).
I have a little boy (doesn’t have Down’s) who stopped gaining weight at 9 months.The doctor’s told us to elimate gluten from his diet which we did… and he has gained 8 pounds in 4months. Just a thought of something to try….
Hi Adeye, I have been reading your blog for quite a while and I just love the way you write about your beautiful family. I am a mother of a little boy with DS my self and I was recomended to feed him something called Bienestarina so he would put on some weight. I already posted a comment before and suggested this for your little girl. It will help her gain weight, If you want I have an extra bag I can send it to you. Please google it and you’ll see, this is something made from corn and other ingredients, it has lots of vitamins special for babies. If you need more info please feel free to email me: [email protected]
I would try that first before the hormones for sure.
Carolina.
do you follow Christine Reed’s blog, Smiles & Trials? one of her adopted daughters, Anna from Russia, has been on growth hormones (maybe she’s done by now, i don’t know how long the treatment takes) so Christine would know about the effects, benefits, risks, all that kind of stuff.