PT evaluation

Caedyn had her first physical therapy session today. It went quite well considering she was ready for her morning nap. Our PT, Julie, is super sweet. She took a full prenatal history and discussed our current concerns. Caedyn passed with flying colors in the reflex and stationary areas. Her reflexes are consistant with that of a seven month old and her stationary/positioning consistant with her age of eight months. There is quite a bit of delay with the locomotion area. Which means while she can roll over, she doesn't really show any signs of interest in doing it, much less one bit of interest in crawling. Julie put her at the developmental age of about four months in that category. Now, being in the medical field and having previous experience in pediatrics, I am taking this with a grain of salt. I know children develop at all different ages and that the developmental milestones are just that; milestones the majority of children meet at any given age. It is hard to remember however, when I read the boy's baby books and see that they were starting to crawl and say words like, "momma and dadda" at eight months. I am certain that Caedyn will catch up and look at this delay as getting to keep my "baby" a baby just a little bit longer than most!

Smitten

Oh my goodness, I am smitten with this daughter of mine. Maybe because I know she is my last baby and her growing up just makes me so sad! Or, it quite possibly could be just because she is so darn cute! I could sit, watch and talk to her all day. Do they really have to grow up?

Update from U of D

My dad and Luanne are friends with a neonatologist at University of Detroit. Dr. Duenas graciously offered to have her good friends at the University (a peds neuro and radiologist) review all Caedyn's records and scans to make sure the treatment here is the best she can be getting and also that her diagnosis is correct. The best part: it is all free and there is no travel involved on our part. So, after gathering all her records, CD of scans, jotting down my prenatal history, etc. I sent the envelope in the mail. Dr. Duenas called last week with the news. I was a little nervous and excited at the same time. She said that the three of them sat down and reviewed all her records and determined she DOES NOT have periventricular leukomalacia as Dr. Umfleet seems to think. This is excellent news! There was also some question of Caedyn having a syndrome called Miller-Dieker. She is negative for that as well. HALLELUJAH! Dr. Duenas said that she is developing just fine and reassured me that even her oldest son didn't walk till 16 months of age. She said she does need to be weaned off the Valium, which we already knew, and states it is not really doing anything to help prevent her seizures, the other meds are. This still doesn't give me the reassurance I am hoping for but, I am praying that God will ease my fears very soon. The Dr. did say however, that statistics show that children that develop epilepsy between 3-6 months of age have a greater risk for infantile spasm, uncontrolled seizure and battle with the disease lifelong. Despite this information, I am certain that with the power of prayer, Caedyn will be healed of her epilepsy. I have seen God's hand in many circumstances and know that he is the one true Healer!
So, now we wait. We either start the wean June 2 or before, if I can muster the courage and faith. I am praying so hard that God will ease my anxiety and allow Caedyn to be well controlled off the Valium. We covet your prayers as well!

Little League Baseball

It's that time of year again. Little League Baseball. I love it. Especially this year. There is no tee to knock to the ground or endless pitches to kids that don't quite have the hand/eye coordination to watch and hit at the same time. They actually play by the rules and it can get quite exciting! Cam is playing for Georgetown Little League again this year and I fully expect Case to join in the fun next year. Jeff and I will be one of those parents we don't envy that has to have one parent at each game or go back and forth. We will have our own little taxi service nearly everyday of the week back and forth between the ball fields. Watching the kids gain talent in the sport and grow in encouragement and self-esteem makes it all well worth it!

God is Good!

We received a good report at Caedyn's neurology appointment on Thursday. Her video EEG was normal and the Dr. was quite surprised that only less than 24 hours on her new meds that this would be the result. We know God was at hand here and anything is possible! This doesn't necessarily mean that her epilepsy is gone, it more so means her meds have her seizures under good control. I think Dr. Umfleet could sense my anxiety about weaning her off the Valium because he was fine with waiting 4 more weeks to start the weaning process. The goal is to wean off of Valium first, then Keppra and continue on a maintainance dose of Topamax. This sounds good to me! The less we have to fight her to take her meds, the better. Of course, the alternative is much worse so we will continue to fight with her! We know there are so many prayers daily for Caedyn and our family. Thank you all so much. This means so much and we are forever grateful that you continue to lift our family up in prayer. We know there is much power in prayer!
We are still going to pursue a second opinion in Detroit as soon as all her EEG records are dictated. I have heard some negative things about the meds she is on and would love to hear another specialist point of view. Plus, what can it hurt? We will go to any length to make sure our Cae is well taken care of.
On a developmental note, Caedyn is doing well. She just starting sitting for longer than 30 seconds unattended, and even braces herself with her arm to balance. This is great. She is right on track and it just makes our hearts sing. We are reminded every day that God is in control and he has his hand in all of this. The fact she is developing just fine is encouraging!

Anxious

Tomorrow is a big day for Jeff, Caedyn and I. We have an appointment with Dr. Umfleet first thing in the a.m. to get instructions on weaning her valium and her video EEG results. While a normal EEG is way out of our league, we are praying for a miracle. If a normal EEG is not the result, we pray that the results are very specific and 100% treatable. I am very anxious about weaning her down on her valium. She has been so stable on the three meds she is on, I hate to mess with it. However, I know she cannot be on this med for forever and I have to face my fear sometime.
Hopefully, Lord willing, my next post will be a positive one. Please continue to keep Caedyn and our family in your prayers as these next couple weeks are crucial.

Toothless Grin

Cam has finally lost tooth #4. This tooth was the big, gangly front one that just hung there for the last four weeks or so. If I didn't have such a complex with saliva and teeth, I would have pulled it out myself a long time ago. It was so gross. While losing a tooth is usually a big deal in our family, this time, the Tooth Fairy forgot. Yes, she forgot! Cam was a lot more understanding than I thought he was when I told him that his dollar fell on the ground and he just didn't see it. However, he didn't quite understand why the tooth fairy didn't take his tooth when "he" left the money. OOPS.

Medicine Mishaps

It is such craziness at our house about 7am and 7pm. Medicine time - Ugh. One cannot describe how much I absolutely LOATHE these times of day. One, I have to get out of bed extra early on the weekends to make sure she gets her meds on time. Two, she hates her medicine. Okay, hate is not strong enough for how much my little princess feels about her four medication twice a day ritual. Hate is not strong enough for how Jeff and I feel about her four medicine twice a day ritual!
We have tried everything to get her to take her meds better than she does. We even had one of them made into a flavored liquid from a compounding pharmacy! Unfortunately, I think it tastes worse and frankly, so does Caedyn. Oh well. We try to make the best of it. I took a picture to show you how our medicine menagerie usually ends. So cute, isn't she?

Where did the time go? Case's 4th Birthday

This year, Case had his birthday on Easter Sunday. What a great day to share with God! It has been busy in our house the past month. With everything going on with Caedyn, Case's brithday snuck up fast. We, of course, were not going to make his day any less special because of our fatigue and chaotic life. Jeff made the promise about 3 months ago, that if Case started sleeping in his bed all night, he would get him a Nintendo DS. This promise was made unbeknownst to me because I would have said a resounding "No" to a video gaming system for a four year old. However, Jeff made a promise he had to keep, if Case lived up to his end of the bargain. Of course, he did. GREAT. So, not only do I not want him to get this as his present, we have no means to buy him one. With Jeff not working, buying such a present is a no brainer. However, there is always ebay and craigslist. So, of course, Jeff found a great deal last minute. I turned in some flex money and we got him the stupid thing. But that was it. He was thrilled. He actually found it (along with the Easter baskets, he has always been nosey) and I had to tell him Jordan left it at our house. What else was I supposed to say?? Anyway, he claims it was his best birthday ever, not to mention that he has only had what, one other, that he can actually remember to base it on? I got a kick out of that.
I attempted to make a cake now that grandma Hennip is officially retired from Connie's Cakes. I didn't take a picture of it if that tells you anything. It tasted fine but looked ridiculous. After I was done decorating, I was very glad that I never helped out at mom's shop during the busy season. I would have ruined the cakes for sure. Nonetheless, Case loved it, Spiderman and all. It was a great birthday, just ask Case.

Happy Easter

Happy Easter! We had such a great holiday weekend. On Saturday, we went to my Dad and Lu's for an Easter gathering with Lu's family. It was nice to get together as we rarely get to see one another! The kids had an Easter egg hunt and got to spend time with their cousins for a couple hours, while the adults had a little time to catch up. On Sunday, of course, we went to church. Rigth before we left, I attempted to take a few snapshots of the boys as well as one of all three of the kids. Caedyn was not cooperating. She wanted nothing to do with getting her picture taken. I think her modeling days are numbered..

This picture just warms my heart. My boys just love their baby sister!

When will that last front tooth fall out? Not soon enough!

Case's newest "smile" - The hairlip. Good thing the dimples cover up the quirky grin!

After church and a much needed nap, Jordan and his girlfriend, Alyssa went with all of us to my mom's for dinner. Each year the kids look forward the grandma's Easter egg hunt. With more than 100 eggs for three kids, we will be eating Easter candy for months!

Case hit the jackpot at the back of the house.

Zach looking hard for his fair share!

Cam is not quite tall enough!

Zach, Case and Cam