Monday, September 29, 2008

Gavin on the Move!

Yesterday I laid Gavin down on the floor to play. I left the room for about 10 minutes and when I came back he wasn't where I had placed him! Gavin and I were the only ones home, so I was quite confused for a minute! Then I realized that he must have actually moved himself! Here are some pictures to prove it!

This is where he started out.

And, this is where he ended up!

This may not look like such a feat for a 2 year old, but this is HUGE for Gavin! This gives me so much hope! I'm such a proud momma! And, I think Gavin was quite proud of himself as well!

Oh, by the way, Gavin was on the move a couple of weeks ago as well. I laid him on the couch playing with his brothers, feeling confident that he'd stay right where I left him. I walked away for a few minutes and the next thing I heard was a thud and the boys yelling that Gavin had fallen off the couch! I ran in the room to find him on the floor, wiggling and talking up a storm! He didn't cry or seem fazed by it at all! His brothers said that he wanted to practice sky diving! I guess I better be more careful from now on! This makes me SO happy! :)

I am a little concerned about a cough that he has had for the last week or so. So far he's tolerating it well and is not having any breathing difficulties, but in the past this has put him in the hospital. Please pray that he can get over this cough and stay OUT of the hospital! Thank you!

"Blessed be the name of the Lord from this time forth and forevermore! From the rising of the sun to its going down the Lord's name is to be praised!" Psalm 113:2-3

Wednesday, September 24, 2008

I finally found something that Gavin doesn't mind eating!

Out of desperation I decided to try giving Gavin a sucker to lick, to see if he'd tolerate it in his mouth or not. He isn't allowed to have fluids by mouth due to the aspiration of them into his lungs, but he's allowed to eat pureed foods. Unfortunately, he hasn't really liked anything in his mouth since having his stroke and puts up such a fight, that I had basically given up trying to feed him by mouth. Yesterday I tried a sucker. He seemed to love it! (Of course! Since it's not healthy or beneficial to him in any way!) Anyway, he didn't gag at all and seemed really interested in the whole process! I'm not sure if it's because I let him hold it with my help, which may have made him feel like he was in control of the situation? Or, if he really wanted something in his mouth due to teething? Or, if he just liked the taste of it? In any case, I'm just excited that he enjoyed it and that we may be on our way to eating by mouth someday! Here are some pictures of him enjoying it:

Gavin told his brothers that if they would just hold out long enough, like he did, Mom would let them have suckers for dinner instead of brussel sprouts! Jacob, Nolan and Caleb thought this was a great idea! We always knew Gavin was a smart one! :)

"How sweet are Your words to my taste. Sweeter than honey to my mouth!" Psalm 119:103

Monday, September 22, 2008

Happy Fall Y'All

Happy 1st day of Fall! This is my absolute favorite time of year! I love everything about this season! (Well...except the fact that Winter is around the corner!) So, Autumn greetings to all of you! I hope you are as excited about it as I am! Also, I have a great way for you to get out and enjoy the beautiful Fall colors and weather!
We want to invite those of you who live in the Grand Rapids, MI area to come out and walk with us in the annual Down syndrome Buddy Walk. It takes place October 11 at Millennium Park, which is located at: 1415 Maynard Ave. S.W., Grand Rapids MI 49534. The walk begins at 10:00 A.M.(rain or shine.) We are especially looking forward to walking this year because, Lord willing, Gavin will be there! Last year he was in the hospital. It is such a fun morning seeing all of the Down syndrome children and participating in all the activities they have! I guarantee that you will walk away with a smile! You can just show up or you can register on-line. If you register you will receive a Buddy Walk T-shirt. For those of you who walked with us last year, we are wearing the same Gavin's Gang t-shirts that we wore last year. We have a couple of them left for those of you who may want to join us this year. You can also donate on-line. The help that this organization gives to families affected by Down syndrome is so important! We have not used the resources available from them too much since Gavin's needs are different due to the stroke he had, but we really appreciate the folder that they put together to hand out to new families in the hospital and also the newsletter that we receive from them! If you are interested, go to to get more info, to register or to donate. When you get to their site, look for the box that says Team Rank and find "Gavin's Gang." Click on "Gavin's Gang" and you will be directed to his page. Thanks in advance for your support and Thanks to those of you who have already generously donated in Gavin's name! We really appreciate your support and feel the love! THANK YOU!!! Hope to see you there!
"Preach the word! Be ready in season and out of season. Convince, rebuke, extort, with all longsuffering and teaching." 2 Timothy 4:2

Wednesday, September 17, 2008

Monday, September 15, 2008

Happy 2nd Birthday Gavin!

When we look back at your two years of life we are amazed at where you are now! There were several days that we wondered if you'd even make it to the next day.....and look at you now! You still have a long way to go, but we didn't think that you'd be smiling for us a few months ago...and you are! We didn't think your seizures would ever stop...and they did! We didn't think you'd stay out of the hospital for longer than 2 months at a time...and you haven't been back for almost a year! You are doing great little buddy! We don't know what your future holds, but we do know WHO holds your future! We are excited to see what God's plan has in store for you and we are very blessed to have you in our lives!

Happy Birthday Gavin! We love you!

"Oh, give thanks to the Lord, for He is good! For His mercy endures forever." Psalm 118:29

Friday, September 12, 2008

His special purpose

Just think
your son is here not by chance,
but by God's choosing.
His hand formed him and
made him the person he is.
God compares him to no one else-
he is one of a kind.
Your son will lack nothing
that God's grace can't give him.
God has allowed your son to be here
at this time in history
to fulfill His special purpose
for this generation.
Roy Lessin
Last week I was wondering about what my purpose in life was. This week I was dusting and saw this picture, and the frame that holds it with these words on it, on our book shelf. This picture and frame were given to us, by my sister, the day Gavin was baptized. It meant a lot to me then, but I think it means even more to me now! I think we all, sometime in our life, wonder what our purpose is. I'm still wondering.....but at least I'm looking for it! And, I know
that if I look with God in mind, I can't go wrong.
"Dear Lord, help me to find Your purpose for me. And, help me to glorify You while I search. Thank you for the knowledge that You, indeed, have a purpose for all of us! Amen!"
YOU have a purpose! I have a purpose! Gavin has a purpose! There is purpose in all that we go through! And, may we ALWAYS remember God's purpose in Jesus, for us! Amen!
Jesus said: "Now my soul is troubled, and what shall I say? 'Father, save Me from this hour'? But for this purpose I came to this hour. Father, glorify Your name." John 12:27-28

Monday, September 8, 2008

Why I Blog

This blog was started on January 15, 2007 by my wonderful sister Amy! (Thanks again Amy!!!) It started out on Carepages, and was started to keep family and friends up to date when Gavin went in for his 1st heart surgery at U of M hospital. We were a couple of hours away from home and this was a way to keep everyone informed. I took it over after a few days and kept it going throughout his hospitalization which lasted 4 1/2 months! (Not the 7-10 days we were told to expect!) I was so thankful to have a way to 'talk' to our family and friends and to get enormous support, love and prayers sent from long distances! Not too long ago I started thinking about why I continue to blog. Sometimes I feel silly doing it since Gavin has remained healthy and out of the hospital for so long. I wondered, "Who would really care to read about our crazy family or about my thoughts on so many things?" I considered stopping because of this. Today I am going to tell you why I didn't.

I decided to continue this blog because:

1) Occasionally I still have a prayer request that can be relayed to so many of you at one time. I have felt so at peace in the past knowing that so many people have prayed for Gavin! So, THANK YOU!

2) I have found this activity to be quite calming for me. It has been a way for me to vent and then walk away feeling so much better after just getting it all out! I'm telling you, if you don't blog or journal, you should!

3) I want to be able to give a 'voice' to Gavin and so many who are unable to speak for themselves.

4) I want to show others that even through times of struggle and uncertainty, there is hope and happiness! I know that others have been through so much more than our family has, but I also know many who, maybe, haven't had to go through something so profound or difficult. I want to share our experience, which has included very difficult days, but lots of great ones too! Not to mention, the grace that we've been shown throughout it all. God has been there with us through everything and we have felt His presence more than I could ever have imagined! We have cried and we have faltered, but God has ALWAYS given us the strength to keep going and to continue to trust in Him! So, I continue this blog to hopefully show others that even though you may have been given a difficult task or time, with God anything is possible! Trust in Him alone!

And finally,

5) I was reminded of a reason why I continue to do this blog last week. I was having a tough time emotionally and just by typing my feelings out on here, I was given such a gift! So many of you left a comment that helped lift my spirits more than you could know! Some days I feel very lonely raising a child with special needs and your comments give me the boost needed each day! I am seriously in awe of the support God has given me through sending me such wonderful friends on this site! Some who I've known for a long time and some who I have had the privilege of 'meeting' here on this site. It saddens me to know that there are so many families who have children with special needs, but I am thankful for the support that I have received from those who are walking similiar roads! What a blessing this blog and you have been to me! I pray that all of your roads will be blessed by God and that you know how important you are!

So, there you have it! I guess I'll be blogging for awhile! :)

"I have shown you in every way, by laboring like this, that you must support the weak. And remember the words of the Lord Jesus, that He said, 'It is more blessed to give than to receive.'"

Friday, September 5, 2008

Just me and Gavin

So, you know that I was dreading sending the boys back to school. The day came and I found myself swimming in a sea of emotions! I was feeling happy because I knew that Nolan and Caleb were so excited about it and I knew that Jacob would love the independence that came with being a seventh grader. Yet, I was worried that Jacob would be feeling sad that school was back in session and I was worried that Nolan and Caleb would be giving their teachers a run for their money! You may want to pray for their teachers this year! They are both full of energy and lots of questions!

Here are pictures of each of them on their first day of school:


-----------------------Aren't they handsome?!-------------------------

Anyway, I started to cry on my way home from dropping them off at school. I'm not usually like this. I may feel sad about sending them back to school, but I usually don't cry! The crying continued when I got home and I was wondering to myself, "Why are you so emotional about this?!" I started thinking about it and decided that I felt sad that Caleb was starting kindergarten and that he had become so mature over the summer and that my 'job' with teaching him was done in many ways. Plus, he is always so cute about telling me how smart and beautiful that he thinks I am. And, I must admit, I enjoy this and I'm going to miss his sweet ways with him being gone all day!

I also started thinking that I just don't have much of a purpose anymore. Pitiful, huh?! Joel thought that I was being negative and that I should look on the bright side of the situation. But, it was hard for me to see the bright side. I told him to think about it. While my life has actually been given more purpose since Gavin was born, the fruits of my labor are few and far between. I reminded him that he goes to work, and as a physical therapist, he sees improvement in his patients. They get better, they thank him for what he was able to do for them, he gets adult conversation all day long, he gets praise and he gets a paycheck! (Although, I must admit he is very giving to me with that paycheck!)

When Jacob, then Nolan went off to school in their younger years, I still felt like I had a purpose with the son(s) that were still at home with me. I would be able help them to advance physically or academically by helping them learn to walk, talk, learn their numbers and ABC'S. It's different with Gavin! I can try my hardest to help him to learn to sit up, etc., but nothing seems to work! I labor, but I don't get the fruits of that labor! It's hard! So, I realized that this was why I was having such a hard time sending my other boys off to school. I have to admit that we have seen a lot of progress with Gavin, especially lately, but it's SO slow and we haven't been given a lot of hope from his doctors that he will advance very far. He HAS stayed out of the hospital, without seizures and healthy for a long time, He HAS become more active and interactive with us, He HAS been smiling and 'talking' to us a lot more and he's even started to laugh a little when being tickled! I am SO VERY thankful for these improvements, but he's almost 2 years old and, like I said, he's still like an infant. So, I struggle with this daily and especially this week! I'd really appreciate your prayers about this! Also, let me know if any of you have any suggestions of how I might be able to find more purpose in my life. It's not like I don't have plenty to do to fill my time, but I feel like I need something more. I've thought of starting a bible study for mothers with special needs children, but I'm not a leader type at all and I don't even know where to begin anyway. But, if anyone is interested or knows of anyone who would be interested, let me know. Thanks!

As if this post wasn't long enough already and as if my week wasn't emotional enough.......We went to Gavin's school lastnight for an openhouse to meet his teachers and see what it was all about. I left feeling more emotional than ever! The class he and I will be involved in once a week will have 7 other babies in it. The ones that I saw at the openhouse are way more advanced than Gavin and younger than he is. So, I felt way out of place and wondered how we would even fit into this class. Plus, the equipment that they have there seems so advanced for Gavin. I can't even imagine him being able to use most of it. So, now I have reservations about even having him go. Oh, the emotional roller coaster of raising a special child! More prayers please!

I do want to end this depressing post on a light note. I found some very positive things to sending our boys back to school! I don't have to play referee all day to Nolan and Caleb! No whining! No arguments! And, when Gavin and I went to the mall to walk around, I didn't have to make a stop at the toy store! :) So, it's not all bad!

"Therefore my heart is glad, and my glory rejoices; My flesh also will rest in hope. For You will not leave my soul in Sheol, Nor will You allow Your Holy One to see corruption. You will show me the path of life; In Your presence is fullness of joy; At your right hand are pleasures forevermore." Psalm 16:9-11

Tuesday, September 2, 2008

Gavin's Things

In following suit of some wonderful mommies in blogland, who have children with special needs, I am going to share some of the equipment we use with Gavin. It's a great way for us to get ideas of what may be helpful to use and it's a way to get to know each other and our children better.

Those of you who don't need to use these items may be interested anyway. I talk about some of these things on this blog and you may be interested in what some of it looks like. I'm not going to take pictures of everything and I can't take pictures of all of the things since some have yet to come in, like a wheelchair. (Which I am not looking forward to using at all! We get enough weird stares when we are out and about in a stroller, so I can only imagine the looks of pity that we will get with Gavin in a wheelchair! Again, I don't know why I care about what others think, but I do.)

Anyway, here are some of them:

This is the nebulizer machine that we use to give Gavin his breathing treatments 3 times a day. We use the little blue tool on top for percussion on his back and chest to try to keep his lungs clear. These items and, of course, God's grace have kept Gavin out of the hospital for almost a year now!!! We are SO thankful for this!

This is the pulse/ox machine that we use to test Gavin's heart rate and how much oxygenation his body has. We used to use it daily, but now just every once in awhile to make sure he's where he needs to be. Gavin has a pacemaker, so his heart should be regulated by it, but you never know. We mostly check for his oxygen level since he's had issues with this in the past.

Speaking of his pacemaker, this is the machine that we use to send info from the pacemaker to University of Michigan hospital so that they can make sure that it's doing what it's supposed to. We hook it up to our phone line and then place the round paddle over his abdomen where the pacemaker is in his body. We do this every 2 months. As the pacemaker gets older we will have to do this more often because the batteries only last around 5 years, so they need to know if they are wearing down. Gavin will need to go back to U of M to have the batteries changed when they are getting low. Hopefully this will be the ONLY reason that he will have to go back there for a LONG, LONG time!

This is the backpack that came with the feeding pump that Gavin uses. It holds the pump and the feeding bag. It's very nice because it keeps the food cold with a pocket for an icepack and it's very discreet looking.

This is what it looks like inside. The bag holds Pediasure which is his only form of nutrition at this time. We are still somewhat working on getting him to like food by mouth. This may take forever! He is switching to another form of nutrition soon. It's something like pediasure, but it has more calcium, zinc and Vit B, which he is not getting enough of with the pediasure alone.

This is Gavin's G-tube. He had surgery last year to place it directly into his stomach. This is the tube that I accidently pulled out awhile back and felt SO bad about doing it! The feeding bag has tubing that hooks right into the tube going into his stomach. Gavin never even tastes a thing! Which, unfortunately, he's just fine with! In this picture you can also see some of Gavin's battle wounds, or scars from the many surgeries that he has had. Not to mention his adorable belly that I love to tickle! :)

These are all of Gavin's medications, minus the ones for his breathing treatments. Those are all the syringes that we use each day for giving the meds. Some of the meds are liquid and ready to give, but 3 of them need to be crushed and added to water. You can also see a can of Pediasure.

This is Gavin's crib that he sleeps in. He shares a room with Caleb. Lately he hasn't been the best roomate because he wakes up 'talking' and wanting to play with Caleb early in the morning! Most of the time Caleb can just sleep right through it thankfully!

This is "Gavin's corner" in our living room. This is where he hangs out and plays with his toys during part of each day. He loves his toy bar that his physical therapist brought for him to use! He's not very good at grabbing for toys yet, but he does when they are right in front of him on this bar.

This is Gavin's mini-recliner chair. Isn't it adorable?! He's really comfortable in it and seems to like sitting in it a lot!

So, there you have it.....more of a day in the life of Gavin!

"It is written, 'Man shall not live by bread alone, but by every word that proceeds from the mouth of God.'"