Cough, Gag, Spit-up, Cry, Sleep.......and Repeat

This is what Gavin's last two days have consisted of. My little Littles is miserable!





Despite doing all that I could think of to try to not let him catch the colds that Nolan and Caleb keep passing back and forth to each other, Gavin got sick! I made them stay out of the room that Gavin spends most of his time in each day. I made a bed for Gavin in the Living Room so that he didn't have to sleep in the same room with Caleb when he was sick. I was very strict about them covering mouths when coughing or sneezing and I stood over them while they washed their hands to make sure that they scrubbed them until they were sore! I opened windows a little to let out the bad germs and let in some fresh air. I don't know what more I could have done, but the fact is, Gavin is sick!

I hate when Gavin is sick! For one thing, it breaks my heart! Plus, I am just so anxious when he is sick! I would love to go back to the days when a cold was just a cold! Instead of now, when a cold could turn into a need for oxygen, a case of pneumonia or even a hospital stay! I hate that I let myself get so worried and anxious! It really consumes my emotions, fearing the worst. Why do I do this to myself?! I guess it's because I never want to set foot into a hospital again as long as I live and that Gavin is my sole responsibility for the most part. I keep telling myself to take a deep breath, relax and that God has it all under control, but I haven't quite convinced myself of this. Which in turn, makes me feel guilty as well, because I know that God will give me the strength to get through whatever happens!

Please pray that Gavin handles this cold well and that he is able to stay home and off oxygen. (His O2 Sats are lower than his norm, but he is holding his own for now.) Pray that he gets over this soon and that I don't work myself into a mess! My state of emotions were already fragile for some reason, and this isn't helping the matter! Pray that I can realize that I am not the one in control and that I must remember to focus on the ONE WHO is!

Have a great weekend and try to stay healthy! Thank you for your prayers!

I'm trying to focus on this:

"Whenever I am afraid, I will trust in You." Psalm 56:3

And even though I just posted this one last week, it's another one that I'm continually telling myself to remember:

"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." Philippians 4:6

Laughter is Good Medicine!

Lately I have been stuck in a rut. Nothing bad is going on, but nothing exciting is going on as well. I'm tired of winter weather and feeling couped up. I'm tired of mundane. I'm tired of seeing saddness in the world. I just feel tired!

Today I felt myself really sinking so I decided to google some jokes to lighten my mood. This actually helped a lot, so I thought that I would share a joke with all of you, just in case you are suffering from the winter blues like I am.


Acting Up In Church

One Sunday in a Midwest City, a young child was "acting up" during the morning service. The parents did their best to maintain some sense of order in the pew but were losing the battle.

Finally, the father picked the little fellow up and walked sternly up the aisle on his way out.

Just before reaching the safety of the foyer, the little one called loudly to the congregation, "Pray for me! Pray for me!"


This joke cracked me up! I don't know if it is so funny to me because it hits real close to home with a couple of our boys, or if it's just a really funny joke? Those of you who go to church with us can probably picture Joel doing the football hold on Jacob or Caleb while leaving the santuary quite a few times! It wasn't very funny then, but looking back on it now, it's pretty funny! So just like that time of our life has passed, (Since Jacob and Caleb sit at least fairly well in church now and Nolan and Gavin have always behaved themselves.) I'm quite confident that this season and time of feeling confined and restless will pass as well!

Well, I'm off to read more jokes and maybe to pray that Spring makes it's way to Michigan faster than it usually does! Have a great day wherever you are! :)


"Lament and mourn and weep! Let your laughter be turned to mourning and your joy to gloom. Humble yourselves in the sight of the Lord, and He will lift you up." James 4:9-10

The Many Faces of Gavin

"Rejoice always, pray without ceasing, in everything give thanks; for this is the will of God in Christ Jesus for you." 1 Thessalonians 5:16-18

Why?! - (Plus an update)

Blogging has been such a blessing to me. I have found comfort in being able to express myself and get things off my chest and mind. I have 'met' some amazing families who have been such a comfort to me and who have shown me that I am not alone in this job of parenting a child with special needs. It has given me an outlet when I feel so lonely in this role of mine, that unfortunately keeps me couped up at home more than I would like to be. But.....it has also brought a burden to my heart. I read about so many children who are sick, their families that are struggling trying to care for them and about parents that have or are in the process of having to say goodbye to their child way too soon! Some nights I wake up so sad thinking about these families and find myself trying to remember all of them, so that I can pray for them.

This week I have felt the burden more than usual. I think it's because so many of the families seem to be suffering with illnesses and hospitalizations lately. This afternoon I went to one of these families' sites and learned that their son would likely not survive much longer. My heart aches for this family and I have found myself in tears this afternoon, thinking about how they must be feeling right now. Please pray for this family and their precious boy Tucker! I pray that they will find peace and strength in God alone!

I purchased a book awhile ago titled; "How could a loving God...?", written by Ken Ham. I started to read it a few times, but always found myself distracted. Today I am feeling so confused and thought that I should go to this book for some answers. I'm finding that the answer to "Why?" is not an easy one to come to. Being a Christian, I know that there is a reason for EVERYTHING! But, being human as well, brings about so many emotions that are just so difficult to accept sometimes. So, the question of the day is "Why?" I know the answer lies in God's plan and that His plan is always perfect. I just wish getting to that purpose wasn't so sad sometimes!

This week I've found myself feeling slightly sorry for myself, due to a sick kiddo and being confined to the house even more than usual. But, this afternoon I find myself sad for someone else. My 'problems' seem so unimportant at the moment! I should just be thankful for my children and that I have a comfortable home to be stuck in! Please pray for Tucker and his family and go to their site (On the sidebar of this blog - "Tucker's Heart") to offer kindness and prayers! I can only imagine how extremely emotional this time must be for them. Also, try to remember how blessed that you are today!


"And do not be conformed to this world, but be transformed by the renewing of your mind, that you may prove what is that good and acceptable and perfect will of God." Romans 12:2

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Saturday Update:

Lastnight at, 9:30 P.M., Tucker passed away. Although I have never even met him or his wonderful family, I will forever be touched by his life and them. My heart breaks for them! The consolation in this pain is that he is now perfectly healed and with his Father in heaven, Who loves him more than anyone could! Please keep this family in your prayers! May they be given peace and strength as they suffer this great loss!

"And the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." Philippians 4:7

A Day at School

I haven't been taking Gavin to his class at school this winter, since he kept getting sick every time that we would go. But, this week we went in to try out some new equipment for him. His physical therapist wanted to see how he would do in a stander. Since Gavin doesn't use his muscles very often, they are very weak, plus he doesn't get any bone strengthening by just laying around. She thought the stander would help in these areas. I took him in on Monday and this is what he thought about the whole process!

Gavin at school:







Gavin once we got home:





I guess it's safe to say that Gavin, like his big brother Jake, does NOT like school!


"And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away." Revelation 21:4

Fashion Show

Last weekend Gavin's Aunt Amy gave him a couple of cute things to wear. Here is a fashion show of him just for her!




Did you see how cute that onsie is?! It has a 'tie' sewn on to it! How ingenious! I think that he looks quite studious!





And how cute is he in this hat?! The boys call it his "grandpa hat." I just call it adorable!


"Do not let your adornment be merely outward - arranging the hair, wearing gold, or putting on fine apparel - rather let it be the hidden person of the heart, with the incorruptible beauty of a gentle and quiet spirit, which is very precious in the sight of God." 1 Peter 3:3-4

Happy Heart Day!

On this day, that seems to revolve around hearts, I thought that I would give all of you a little lesson on the organ that we call the heart. Not only is it Valentine's Day, but it's the end of an important week (February 7-14) that raises awareness to Congenital Heart Defects. It's funny how this day takes on a whole new meaning when you have a child that was born with a heart defect! The heart becomes so much more important to you than you ever thought that it would!



Congenital heart defects are abnormalities in the heart's structure that are present at birth. Approximately 8 out of every 1,000 newborns have congenital heart defects, ranging from mild to severe.

Congenital heart defects happen because of incomplete or abnormal development of the fetus' heart during the very early weeks of pregnancy. Some are known to be associated with genetic disorders, such as Down syndrome, but the cause of most congenital heart defects is unknown. While they can't be prevented, there are many treatments for the defects and any related health problems.

How a Healthy Heart Works

To understand more about congenital heart defects, it's helpful to understand how a healthy heart works. The heart, lungs, and blood vessels make up the circulatory system of the human body. The heart is the central pump of the circulatory system, and consists of four chambers — the left atrium and left ventricle and the right atrium and right ventricle.

The heart also has four valves that direct the flow of blood through the heart:

The left atrium of the heart receives oxygen-rich blood from the lungs and then empties into the left ventricle through the mitral valve. The left ventricle pumps oxygen-rich blood out to the rest of the body. Blood leaves the left ventricle through the aortic valve and enters the aorta, the largest artery (a blood vessel that carries oxygenated blood) in the body. Blood then flows from the aorta into the branches of many smaller arteries, providing the body's organs and tissues with the oxygen and nutrients they need.

After oxygen in the blood is released to the tissues, the now deoxygenated (oxygen-poor) blood returns to the heart through veins, the blood vessels that carry deoxygenated blood. This blood, which appears blue, enters the right atrium of the heart and then travels across the tricuspid valve into the right ventricle.

The right ventricle then pumps deoxygenated blood through the pulmonic valve into the lungs. The oxygen in the air we breathe binds to cells within this blood that is being pumped through the lungs. The oxygen-rich blood, which appears red, then returns to the left atrium and enters the left ventricle, where it is pumped out to the body once again.

This is the normal pathway that blood travels through the heart and the body. However, abnormalities in the heart's structure — such as congenital heart defects — can affect its ability to function properly.

The following defect is the one that Gavin was born with:

Atrioventricular Canal Defect
This defect — also known as endocardial cushion defect or atrioventricular septal defect — is caused by a poorly formed central area of the heart. Typically there is a large hole between the upper chambers of the heart (the atria) and, often, an additional hole between the lower chambers of the heart (the ventricles). Instead of two separate valves allowing flow into the heart (tricuspid on the right and mitral valve on the left), there is one large common valve, which may be quite malformed. Atrioventricular canal defect is commonly seen in children with Down syndrome.

Gavin's defect has been mostly repaired, except for his mitral valve. The surgeon, although trying twice to fix this, was unabe to repair it. This means that he still has a moderate to severe leak in his mitral valve. So far his heart in keeping up with the demands of his body, but most likely he will need to have a mitral valve transplant some day.

Fortunately, many infants are recognized to have serious heart disease even before birth on ultrasound tests. A fetal echocardiogram is a specialized ultrasound that allows doctors to see the baby's heart in great detail and plan the best care for the baby while still in utero.

We did not know that Gavin had a heart defect or Down syndrome before he was born. I had a nagging feeling that something was wrong throughout the pregnancy, but the ultrasound showed nothing to be wrong. So, we were quite surprised when Gavin was born having both of these issues. The outcome would not have changed anyway and we would have continued on with the pregnancy no mater what, knowing that EVERY child is a gift from God. I am actually happy that we did not know about these issues until he was born.


Signs and Symptoms of Heart Defects

Because congenital defects often compromise the heart's ability to pump blood and to deliver oxygen to the tissues of the body, they often produce telltale signs such as:

-a bluish tinge or color (cyanosis) to the lips, tongue and/or nailbeds
-an increased rate of breathing or difficulty breathing
-poor appetite or difficulty feeding (which may be associated with color change)
-failure to thrive (failure to gain weight or weight loss)
-abnormal heart murmur
-sweating, especially during feedings
-diminished strength of the baby's pulse

(***Information taken from kidshealth.org***)


So, there you go! Hope that you enjoyed the lesson! Be thankful for a healthy heart!

Happy Valentine's Day!!!





"Blessed are the pure in heart, for they shall see God." Matthew 5:8

Loss of Dreams

Today I'm coming to you asking for prayers. Gavin has been doing so well lately, yet there are still things that concern me and that make me wish for more. We feel so very blessed to have Gavin in our lives and are so thankful for the health that he has been having and the progress that he has made lately! Still, I think of the dreams that I had for my once unborn child and feel sadness knowing that many will never come true.

It is very difficult knowing what Gavin should be doing at this age and seeing the level that he is actually at. He is almost 2 1/2 years old, and yet he is at about a 2 month level developmentally. This is SO hard to accept some days! I see other children at the store and I watch them closer now than I did before I had Gavin. It amazes me what such little ones can do! At home I am able to see Gavin's achievements, but out in the real world I see how far behind he is!

I'm asking for you to pray that Gavin can remain as healthy as he has in the past year and that he can remain seizure free. (This week I saw something that looked like it could be a seizure from him. It was a different movement than the type of seizures that he had in the past, but it was a movement that was not normal for him. It freaked me out and brought back very anxious feelings that I felt when he was still having seizures. He hasn't done this movement since and I'm praying that he doesn't do it again!)

I'm also asking for you to pray that Gavin can, one day soon, be able to sit up on his own. He definitely has more strength than he used to, but he is still very floppy and has very weak head and upper body control. It would make life so much easier if he could at least sit on his own one day! We don't take Gavin out very often since he has a low immunity, but it's also because it's just too difficult when we do. His not being able to support himself at all makes it quite exhausting to go places with him. I feel like I'm complaining, but this is not my purpose for this post. I'm just giving you an idea of how life is with Gavin and asking for you to pray for him and us.

I am so proud of the accomplishments that Gavin has made, despite predictions that many doctors have made for him and I am VERY grateful to God for these accomplishments! And yet, I can't help but feel a great loss for my child and our family as well! I've been told that Gavin doesn't know any better and that he is happy and loved. I know that this is true, but he has also had to suffer so much and I've had to watch this and it's hard! I've also been told that we are blessed to have 3 other children who are healthy, and while I know this and feel this too, it really doesn't make it easier knowing that Gavin's life is the way that it is! I've also been told that since Gavin has Down syndrome, his life does not amount to as much as an average child! (Seriously, I've been told this!) He is still a child! He is my child and it hurts to have a child who's dreams that I had for him won't come true! There is a feeling of such loss and these feelings don't just go away because we are blessed in SO many other ways!

God made all of us, God made Gavin and God does NOT make mistakes! There is a great purpose for all of our suffering, but it is still suffering, which is why I struggle some days. Please pray that Gavin will continue to progress and stay healthy and that we can stay at peace with God's purpose for our lives. Thank you!


"For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. And I know that all things work together for good to those who love God, to those who are called according to His purpose." Romans 8:18 & 28

20/470

Lately I've noticed that Gavin seems to be seeing better than he has in the past. He has been trying to focus on our faces more and he has been tracking bigger objects quite well. Yesterday I found out that he definitely IS seeing better than he used to!

I took him to the eye doctor and they determined that he is seeing at 20/470. This is still considered legally blind. (You are considered legally blind when your vision cannot be corrected to better than 20/200.) But, he used to be at 20/2700!!! So, this is a HUGE improvement! Keep in mind that he sees 20/470 with glasses on, so without glasses he sees a lot worse. The doctor said that means that he is probably able to see things as big as the top "E" on an eye chart. I was VERY happy to hear this news! What a blessing! Now if we can only find a way to keep his glasses on his face?!.......?!

Here are some pictures of Gavin playing with his toys with Caleb. Aren't they cute?!






"For we walk by faith, not by sight." 2 Corinthians 5:7

Feeling Thankful!

Yesterday I made a visit to one of the hospitals that Gavin has spent many a day and night at. Thankfully this time around it was to go to visit my cousin's beautiful new baby daughter! She is so precious! I love babies! Anyway, it was a weird experience for me walking through those halls again. I started to feel really anxious as we drove through the parking structure, that I drove into so many mornings and evenings while Gavin was hospitalized. All these memories came flooding back as I walked those halls and smelled all the familiar smells. I've been back a couple of times for outpatient visits for Gavin and to drop off our Christmas bags that we made up for the patients, but otherwise it's been a long time since I've had to make that trek.

It wasn't a good feeling at all, but I was so relieved to be there for a joyous occasion this time around! I kept saying to myself, "Thank You God! Thank You that we haven't had to be here for over a year and that Gavin has been as healthy as he has been! THANK YOU!" I was feeling very grateful, that's for sure!

Having to spend a long period of time caring for a child or loved one, in the hospital, is so very tiring! It is such an emotional time and ages you beyond belief! It breaks my heart knowing that there are so many having to do this right now! If you know of anyone going through a time such as this, please be extra kind to this person and support them the best that you can. God gets us through, but having others around to show you love and care is so tangible and helpful! We were blessed with many helping hands throughout Gavin's many hospitalizations and I really don't think we could have done so well without this love and support! So, THANK YOU again to those of you who supported us through those trying days!!!

I don't know what the future holds for Gavin. I know that he will likely spend more days in the hospital, due to his heart and lung conditions, but today I'm feeling VERY THANKFUL to be hangin' out here at home with him! Our days aren't always easy, but they sure are easier when spent at home with this little guy!




"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." Philippians 4:6-7

Playing with my toys in my new seat!

For the LONGEST time, Gavin would just lay around and was not capable of playing with anything. It is so nice to watch him grab for his toys and seem to enjoy playing with them! He has a LONG way to go, and yet he has come so far!

This seat is actually a stroller seat that removes from his stroller frame and has a base to hook into for in the house. It's quite an awesome invention if you ask me! Since he isn't able to sit up on his own, it's great to have something like this that we can strap him into so that he can sit up, play and look around in! It's so hard to feel like I'm stimulating him enough, since he isn't able to sit or really play by himself. He struggles so hard just to grab for a toy, but he is definitely trying harder lately! We move him from place to place all day long trying to keep him as active and stimulated as we can, in between snuggle time, of course! :)

His physical therapist has been bringing in lots of new toys and contraptions lately, so hopefully he's enjoying himself! I'll share more pictures of him later doing PT. He's even going to try out a stander for the first time in the next couple of weeks! We are excited about this! Hopefully Gavin will be as excited as we are about trying this out!

Have I mentioned how much I love this little man?!





"Let the words of my mouth and the meditation of my heart be acceptable in Your sight, O Lord, my strength and my Redeemer." Psalm 19:14