I need some advice and lots coming up!

I am wondering if anyone has any experience with Botox injections for their child? Gavin's neurologist is suggesting this for him. It supposedly helps with kiddos who have issues with high tone in their muscles.

Gavin is low tone in most of his upper body, which is partly to blame for his inability to have good head and neck control or to be able to sit up on his own. But, he has very high tone (stiffness) in his lower body, due to the stroke that he suffered. This also makes it hard to learn to sit up on his own because he is so stiff. The two in combination are not a good thing! You have to physically bend him at the waist to get him to sit on your lap and it takes a lot to bend his knees, as well, to change him. He always sits with his knees out straight and slides out of a sitting position constantly. It really tires you out to hold him for a long period of time because you have to keep him up in a sitting position with lots of effort. It's difficult to explain, but it would be wonderful if Botox could help with this!

I'm just wondering if this would help? I don't want to put him through the injections if they don't help much. And, are they even healthy to take? If any of you have any info on this, I would really appreciate your help!

Gavin has some other things coming up as well. I have to get his blood drawn to check his thyroid level. He takes daily Synthroid for hypothyroidism, but we are wondering if he is getting too much of the medication right now and this is attributing to his recent weight loss? I'm hoping it's an easy fix like this, because I hate seeing him so thin and not knowing what the problem is!

Gavin's wheelchair is finally coming in tomorrow! It has taken about 11 months to get it in! They call it a stroller and it pretty much looks like one too. It will be necessary to have if he goes to school next year and especially if he rides the bus, because it is transit ready for safety. Don't even talk to me about school and bus riding though! These two topics scare me to death! I am so torn on what to do with him next year! I know that school would be good for him, because he would get so much more therapy from teachers who know what to do for little ones like Gavin, but the thought of sending him away from me when he can't talk or do anything on his own really worries me! Plus, there is the higher risk of him getting sick factor to think about! And riding a bus on his own?! This worries me even more! The problem with driving him to shool myself is that the times are the same times that I will have to drop off or pick up our other boys from school. Anyway, I have time to think about all of this, but I don't want to!

Gavin's P.T. has also helped us in getting some other new equipment ordered for him. It will probably take forever, like the wheelchair, but we are looking forward to getting it. Hopefully they will help to further the progress that Gavin has made over the last couple of months.

We ordered a new chair for him. It's called a Tiger chair. It can raise up to table level or go down to floor level. This will be great for use at the kitchen table and for playtime! Hopefully he likes it better than this chair that we tried him in at his school!



We also ordered a stander for him. He needs this to help build bone strength, since he obviously doesn't use his muscles or bones like an average child of his age. He is also being fitted for AFO's to wear while in the stander. They are like braces to help keep his feet and heals in their right position. The stander that we ordered is different than this one and hopefully he likes it better than he did the one we tried him in at school!



I'd much rather see Gavin happy like this!



So, there are lots of exciting and scary stuff coming up for Gavin! I'm praying that it all works out and benefits him in a positive way! He has really made some exciting advances in the last few months and I can't wait to see what the future holds for him and us!


"For I know the thoughts that I think toward you, says the Lord, thoughts of peace, not of evil, to give you a future and a hope." Jeremiah 29:11

Happy Mother's Day!!!

A fairytale Mother's Day:

Breakfast in bed., Children who get along all day long., A clean house., Everyone is healthy and happy., Lots of "Thanks Mom for all you do!"



My reality of a Mother's Day:

Awoke to Gavin crying, who had a HUGE dirty diaper explosion and needed serious cleaning up., No time for breakfast before church., The boys were arguing and acting goofy most of the day, as usual., Our bathroom sink was leaking and water was filling the cabinet below it., Gavin is getting sick and there were several injuries to our other boys as well!



And, You know what? I wouldn't know what to do with myself if it had gone any other way! :) Plus, I really wouldn't want it any other way! This is my life and I wouldn't change the 'job' that I have for ANY OTHER!


I LOVE MY BOYS!!!




Happy Mother's Day to all you wonderful Mommas out there!!! I hope that you enjoyed your day!!

"For You formed my inward parts; You covered me in my mother’s womb. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well." Psalm 139:13-14

Forever a Baby

I absolutely ADORE babies!!! I always have. I don't think that there is anything else on this earth that makes me more happy than a baby! My most favorite stage of a baby's life would probably be at 6 months of age. They are usually able to sit up at this age, yet unable to crawl and get away. They are so interactive and cute at this age! Plus, they can't talk back to you yet, but they are usually saying 'ma ma' and 'da da.' I have said many times; "How perfect it would be if they could just stay this way forever." Well, now I'm second thinking those remarks!

I kind of got what I wanted. Gavin will most likely stay a 'baby' forever, thanks to the stroke that he had. Depending on how long God plans on keeping him here on this earth, (with his lung and heart issues, his life expectancy is much shorter than our own), his life will be spent living mostly babylike. He is at about a 2 month level now. I pray that he can get to at least a 6 month level, because that is my favorite age :), plus then he could at least sit up on his own. Only God knows how far Gavin will advance.

There are many positives to having him stay a 'baby' forever. He will always like to cuddle with me! He won't talk back to me! I can always dress him however I want! He'll always live with me, at least until I can no longer care for him, ETC...

BUT...lately I've been thinking about the many negatives as well. Such as the following: He WILL grow and get bigger. This will make for a very heavy 'baby'! He can't tell me what he needs or feels. (This one especially bothers me!) So often I think to myself, "Is he hungry? Is he cold? Is he hot? Does he hurt? Is he bored? Is he enjoying this? How would I know if something bad happened to him when I wasn't around? Does he want something? Does he have an itch? Is he comfortable?.....and the list goes on! I am constantly thinking of his needs. I want him to be happy and comfortable, but since he can't tell me if he is, I need to make sure that he is feeling as good as he possibly can be.

I love Gavin just the way that he is! But, I sure hope that he is loving life the way that it is for him. He's my 'baby' and he will always be my 'baby'!


And, just because I am CRAZY and I LOVE baby bottoms, I had to take a picture of Gavin's! Don't worry it's covered! Check out this Levi's covered bum! I'm in love!






"Therefore do not worry about tomorrow, for tomorrow will worry about it's own things. Sufficient for the day is it's own trouble." Matthew 6:34

Bring on the Calories!

Since Gavin has lost 3 pounds in the last month and a half, his nutritionist has formulated a new plan for feeding him. It doesn't make sense why he has lost so much weight, but she is hoping that he just needs more calories. Gavin has stayed at the same weight (within half of a pound) for about a year and a half. Since he had been too heavy at one point (2 years ago), this hasn't worried them. But, now that he is losing weight, it is worrisome. It's not like he expends a lot of the calories that he gets. He pretty much lays around, although he is more wiggly than he used to be and he rolls over to his tummy continuously throughout the day. (He still can't figure out how to roll from his tummy to his back though.) So, why he is losing weight is a mystery???

We have been instructed to increase his calorie intake by 11 percent. Why 11%, I don't know? I thought it was kind of funny actually. Why not 10% or 15%? I have found that doctors and nutritionists are very exact and precise with special kiddos like Gavin! For some reason I find this to be funny. I guess because I'm not a person that reads the directions. I just add a little bit of this and try to figure it out on my own. Having Gavin has made me become very exact in many ways. Maybe this is a good thing, but I don't like it.

Gavin is still getting the same amount of fluid that he was getting, but he is getting more of the food part of his intake and less of the water part. He struggles with getting too much fluid into his stomach and has gagging issues, so increased volume wasn't possible. Since he receives all of his food/water through his G-tube, it works out that he is still getting the same amount of liquid each day. It's just in a different form.

Am I boring you? This is what I mean by having to be more exact, since Gavin has come along. Some of you probably understand and are interested, the rest of you are probably yawning. :)

Anyway, hopefully this works for Gavin. He doesn't look skinny, especially in pictures, but that is because his face looks full and he is short for his age. (Most people with Down syndrome are on the shorter side.) If you saw him in his birthday suit, you would see just how skinny he is! His tummy has NO extra fat. You can see and feel his ribs. And, his legs are SKINNY! So, Bring on those calories! I wish that I had this problem!!!






"Then the King will say to those on His right hand, 'Come, you blessed of My Father, inherit the kingdom prepared for you from the foundation of the world; for I was hungry and you gave Me food; I was thirsty and you gave Me drink; I was a stranger and you took Me in.'" Matthew 25:34-35

How You Know That Summer is Surely Coming:

There are several refreshing signs that let you know that Summer is on it's way here in Michigan. Winter seems to last forever here and some days it seems like warm weather will never come again! This weekend showed signs that we are confident that warm weather is definitely on it's way!

Joel tilled the garden and helped the boys put up the trampoline again. The trampoline is a favorite pastime of theirs and it means that I will be told, "I'm bored.", a whole lot less!






Caleb has started bringing me flowers that he has picked. He loves doing this and I love getting them!



Like I said in my last post, sports take over our lives.





And, Gavin can wear his baseball hat, instead of a winter one, when we are outside!




AHH.....Summer is finally on it's way! :)


"To everything there is a season, A time for every purpose under heaven." Ecclesiastes 3:1