Friday, January 30, 2009
I know, it may seem strange that I would pray for Tuesday, and skip the weekend. I sit here feeling compelled to set aside any of our personal problems, worries, concerns to share the story of another beautiful child (and her family) in need of a miracle.
We have completely different battles to try to overcome, yet our battles still feel the same. They tug at your heart....they break your heart! This family is battling CANCER that is trying to take over in this beautiful little girl.
Please take a moment, click here, read their story, and pray! Pray, think positive thoughts, send some love .... whatever you do when you are in need of a miracle! I will not only be praying for Tuesday on Tuesdays, but every day of the week!
Thursday, January 29, 2009
Wednesday, January 28, 2009
Tuesday, January 27, 2009
Isn't this an adorable duckie blankie? These are called Lovems and are made by a very talented lady at Nancy's Etsy Shop, where you can find a wide variety to choose from.
I'm trying to win this Lovems, for Cole, from my friend over at The Bird Flock. She is hosting her very first giveaway! I know Cole would LOVE to have the soft blankie.
Monday, January 26, 2009
JAM's Own Reality
Isn't this such a sweet sight? Cole passed out from playing in his jumper.
I think we have forgotten what this IS exactly! It is apparently fairly common for children with Cerebral Palsy to have trouble sleeping...Or so I've been told. I've not researched it extensively, it is obvious that Cole definitely has trouble.
Cole has trouble with self-soothing, so when he wakes in the middle of the night (several times a night), he can not soothe himself back to sleep.
On a typical night he would only sleep about three hours, wake and fight his sleep for about 45 minutes to an hour with me trying to help him get back to sleep, then start all over.
We have tried about five or six different medications to help him sleep. These would usually help him sleep around five hours versus the three. Every medication seemed to work in the beginning for a while but then he would be back to waking all the time again. We would increase the dose and would get a little sleep for a short time until we would just have to try another.
There have been some medications that seem to upset his stomach, or so we thought. It is always just a guessing game, all trial and error. When taking these meds to help, when he woke up he would just scream, like he was in pain.
I don't want to jinx him but for the most part, other than if he has a cold, constipated or anything else that just makes him uncomfortable, he has been doing real well on this most recent medication of Amitriptyline HCL.
We have had a few nights with NO sleep (ok, two hours) but that was due to constipation not medication or just not sleeping. Hopefully this medication will continue to work for him.
Thursday, January 22, 2009
These are pictures of Cole Dawson on his first birthday. We have 1 month and 1 day until he turns 2 years old.
Most times I honestly don't see what he can NOT do (sit, crawl, stand, talk, walk and only eating baby food) but just see him as my baby. He does get heavy and awkward to carry around everywhere. But, I don't put much thought into the fact that he is the age that he is.
It is easy for me not to compare his milestones to those of what he should be doing and/or what the other two boys did at this age since there is such an age difference. I am thankful for that difference and they are such great helpers!
Thursday, January 15, 2009
Cole's Uncle Bobby designed this poster of Cole and we used it for his birth announcements almost 2 years ago. Cole has come a long way since the day he was born, not breathing at all. He has brought us all a long way and taught us so much!
For more A Thousand Words Thursday go see Jen at Cheaper than Therapy.
Tuesday, January 13, 2009
Cole-born 2/23/07, pic-taken 2/25/07 after being rushed off to NICU in a different hospital than where I had to stay.
This past weekend I, once again, had to deal with that panicky, nauseous feeling in the pit of my stomach. The feeling of dread!
It seems to be a common occurrence for children with cerebral palsy or any disability that causes low tone in the trunk, to have intestinal complications. Unfortunately, Cole is one of the affected ones.
We constantly have to monitor his medications, keep a close eye on what he eats, and I have to massage his tummy. If we don't do these things then he gets constipated and could have a blockage, which could be very dangerous.
Cole had been a little cranky most of the weekend. On Sunday we skipped church, I knew something was wrong. He had dozed off for about a 10 minute nap and woke up literally screaming like bloody murder.
I couldn't get him to calm down even after rubbing his belly and pacing around bouncing him. Joe tried to do the same with no success either. I helped him a little, and gave him some medicine then called the doctors office.
It breaks your heart and makes you feel so useless when your baby, that depends on you completely, is in so much obvious pain and you can't do anything to help.
After a little more than 2 hours of screaming, and talking to the doctors nurse, Cole finally fell asleep in Brett's arms while I was getting my shoes on. He was comfortable in his car seat so we ran some errands and (thank God) did not end up having to make that ER visit. He was fussy most of the night but didn't ever scream out uncontrollably again.
Now that my Wordless Wednesday is not so wordless, if you would like to see other Wordless Wednesday posts you can visit 5 Minutes for Mom.
Thursday, January 8, 2009
Uncle Bobby caught us in a private moment. We didn't mind at all.
To this day I will still smother Cole's sweet little forehead with kisses while I am giving him his bottle.
I just love my beautiful precious little baby!
For more moments like this visit Jen at Cheaper than Therapy.
Wednesday, January 7, 2009
It is amazing how alike these feet are and yet how different. Just like each of my boys that they belong to. I am generally not to impressed with feet but I have to admit that I love this picture of my boys' feet.
It shows to me just how much each has grown. I'm not necessarily talking about how much their feet have grown but how much each one of my boys has. How they start out the cutest little kissable feet that barely touch the ground. Soon those feet are everywhere, running, jumping, and climbing. Before you know it you see they have grown into quite responsible feet, walking the path they are meant to walk.
I pray that some day Cole will get that chance to literally 'walk' his path.
For more Wordless Wednesdays go see 5 Minutes for Mom.
Monday, January 5, 2009
Here are pictures of Cole's previous physical therapist, Christa, fitting Cole for his Theratogs and making adjustments. She had to take a special training to learn which direction to wrap or what extra strappings to add to make the right corrections for each childs situation.
I'm trying to remember exactly when Cole first started wearing his Theratogs. I think it may have been towards the end of September.
The Theratogs can be a little complicated to put on him at first but I have quickly learned exactly where to stick all the little velcro tabs that hold everything where it should. They are made of some sort of neoprene and help support his trunk. They remind him to use those muscles.
Cole still can not sit unassisted but there is a definite difference in his posture after wearing his Theratogs. You know that they are working when a friend that holds him only occasionally and didn't even know he had the Theratogs on was in shock noticing how much better he was supporting himself. She said he is not nearly as 'floppy' as he was prior to wearing them.
He is doing so much better trying to sit and does well for a few seconds at a time. Typically when we work on his sitting he will get so excited and therefore will go into extension. This is when he will fall backwards or to the side.
I would highly recommend others trying the Theratogs as I can really see they have helped Cole so much. They have been great during the winter but I am a little concerned that they may be too hot this summer. We will see!
Sunday, January 4, 2009
I know...I have been awful about staying up to date and posting here for my wonderful followers. I promise to try to be better this year!
Cole had a great time and is enjoying all of his gifts. I especially want to send a special 'THANK YOU' out to Ooh LaLa MaMa for the awesome shirts. You should go check them out...they are SO soft and trendy. They would be great for gifts too if you don't have children. Cole, of course loves his Baby Signing Time & Signing Time. He also has been having a blast in his Pop-A-Tot and this is so convenient for us to take on the go.
We hope you all had a wonderful holiday season!