Thursday, April 17, 2008

Some weeks are harder than others. . . .

While this week has most certainly not been a bad one, it has definitely been draining. . . .emotionally, physically and mentally.

The week started out on a positive note. Joshua slid into Evans spot for a physical therapy "checkup" on Monday and was successfully discharged from the program for the time being. He is doing exceptionally well and, at this point, there is very little that his therapist can do for him that he is not already doing for himself.

Unfortunately that triumph was a bit short-lived as all the kids proceeded to come down with a nasty cold. . . .which they so kindly passed along to me! Somehow Richard has managed to stay relatively healthy through it all, but it has been a regular snot-fest between the rest of us (I know, not a pretty picture).

On Monday afternoon I noticed that Evan was developing blisters on the tops of both of his feet right at the opening of his casts. The blister on the left foot was relatively small, but the blister on the right was literally the biggest blister I have ever laid eyes on. I called the nurses line at his orthopedists office and left a message, unsure of what I should do should the blister burst. She called me back on Tuesday morning and asked us to come in that afternoon so the doctor could examine him. I took him in and the doctor decided to split his casts a little more to relieve some of the pressure, but to leave the blister alone. The nurse let Evan pick out some fiberglass to cover his casts and he chose to go red. . .like Elmo, of course! We will be going back in on the 28th for a cast change. We decided that it would be best to take him back into surgery and do the cast change under anesthesia. While I would certainly prefer that he not have to go under anesthesia again, I feel like it will probably be best for him. The clubbing of his feet was severe and the doctors will likely have to do some stretching and manipulation on his still very tender feet and I can only imagine how painful that will be. On top of that, Evan just doesn't do well with the hospital scene in general and I am worried about the effect it might have on him psychologically if he is awake and alert for the procedure. While I do feel comfortable with the decision, it certainly wasn't an easy one to make.

Evan is recovering beautifully from his surgery. He is now off all pain medications and seems to be feeling much better. . . .good enough at least that he asks me several times a day if he can swing, slide or drive his cozy coupe car! His feet are still pretty swollen, so he spends most of the day with his feet propped up on a pillow, but occasionally I can't help but give in to his pleas. Today I let him "drive" his car for awhile. Usually he sits in his car and I push him around and we play "bumper cars" with the other kids. Obviously we did not do that today. Instead I just let him sit in the car while I ran inside to make the kids' lunch. A few minutes later I looked out the window and saw him using his mouth to lift up his arm (using his sleeve) so that he could move the steering wheel! Talk about a smart kid! I never cease to be amazed at the things he figures out!

Not everything has been sunshine and roses for Evan however. We are still really struggling to get him to eat. We had made such progress with him in this area prior to his surgery, but I feel like we have taken 10 steps backwards. He is drinking, but it has been next to impossible to get him to eat. I'm not at all worried that he is going to starve himself. When he is hungry he WILL eat, but sometimes he only eats a few bites of something once or twice a day and as a mother, it is stressful! He is also having a really hard time sleeping. Evan is not a back sleeper and unfortunately, being casted all the way up his thighs has forced him to become one. . .and he is NOT happy about it. He wakes up several times each night screaming that he is "stuck" and begging me to take his casts off. It absolutely breaks my heart and tears me up that I cannot do anything for him. It is emotionally draining to watch your child go through that. I am hoping that he will be able to move better once he is in the short casts so that he can get a better nights sleep.

On a bit of a brighter note, Jacob and Lukas have been working on potty training this week. . . and I am very happy to report that they are doing a FANTASTIC job! Sure, we have had some accidents here and there, but I have to say, I have been very impressed with both of them and I am actually glad that I waited until the boys were home and things had settled a bit to start working on potty training with them! I'm so proud of my big boys!

This week has been full of emotional ups and downs for me, but I have to say, amidst it all, my heart is full and I feel so blessed to be where I am right now! The Lord is truly smiling down on us and just knowing that makes the more difficult moments a little easier to bear!


Jill said...

I'm certain that my late night phone calls have helped make this week easier...ha ha.

I'm glad that little Evan is doing better - I love the picture of him pulling his arm up with his sleeve! So cute! :o)

mommajeane said...

Oh Valerie I am sorry to hear about little Evan... I am Luke's mom from AAC. Our Luke was in external fixators for about a year on each leg... and the l foot was a clubfoot. It is hard to watch them go thru this... Luke was actually on pain meds. the whole time and they gave him valium and we switched midway to lorazipam for his mental well being. It helped alot. It was so bad at times Luke would throw up a couple of times a day. His appetite too was not much during that year... I can say though he now walks and we made it. If I could I would hug you guys... I know how hard this is. Email me if you like... We have been praying for him.

MamáChanga said...

Whew!! Sounds like you've had a very busy and difficult week. I applaud the terrific job you're doing as a mom and will continue to send prayers and positive thoughts your way. Keep up the good work and remember to be good to yourself!

JKI said...

I have been praying for you guys and will continue. What a trooper Evan is!

Cynthia Rieben said...

I really enjoyed the photos of Evan in his car and moving his arm!! I'm glad that he expresses interest in so many "normal" things -- I think that keen interest motivates him to try to do things.

Excited about the boys' progress with potty training. How is dear little Maren? I miss them all a lot.

I hope that you made a quick recovery from your strep -- its not as if you had any time to be sick yourself, did you? :-)