Sleeping-AGENIS!

Yes! We are getting a full night sleep again. I can finally report this after about 10 days or better of Hayleigh sleeping through the night. We started her about 6 wks ago on Labetolol daily at 8am. This med helps her with her moods by suppressing her melatonin spikes throughout the day. This is all part of the European study that was done and shared with me by some very wonderful SMS folks! We supplement her with Melatonin and a combination sleep aid at around 8pm and she typically goes to bed around 8:30pm and wakes around 6-6:30am! She once woke at 8:30am!!!!! (results not typical. Individual results may vary. Consult your...OKAY! Sorry I couldn't help myself!)
Shannon from Illinois (taylorbugkisses.com) who has an SMS daughter shared a sleep aid by the name of "Sleep Assure", so I looked at the ingredients in that and was able to find one comparable locally at Walgreen's called "Alteril". I wanted to try something without having to spend a lot in case it did not work. I think from a cost perspective it would be better to order "Sleep Assure". "Alteril" has 2mg Melatonin in it along with multiple other natural elements that promote sleep and delayed waking. I supplement with 5mg of extended release. I crush both pills (Melatonin and Alteril) put it into a couple spoonfuls of ice cream and voila SWEET DREAMS!
Her mood swings are so much less and she is much more joyous throughout the day. Improved communication with HayJoy too! We don't experience the "marathon naps" as I call them, where she is sleeping 3+hrs at a time. She no longer falls face first into her dinner anymore. Bonus for a child who loves to eat!
I want to say thanks to all who have been praying, reading, supplying info to help us in this journey. I want to especially recognize Dr. Wendy Burdo-Hartman and Dr. Mark for taking a chance on this drug therapy with us, you are all a tremendous blessing!

I hope and pray this info will benefit others.

until next time...

New Med & New Behavior

Well I would love to report that Hayleigh is sleeping all night and mommy and daddy are well rested since starting Acebutolol ( beta blocker to help suppress over production of melatonin), but I can't. She is less sleepy during the day for sure and no more marathon naps! Unfortunately we still wake up at o'dark thirty! ( I refrain from using Crack of Dawn cuz my mother my take offense!)
Adding a sleep aid or straight melatonin at night for sleep has not seemed to help her sleep either. In fact it would appear that she is more amped and aggressive.
First time ever she threw 3 plates of food and a Christmas party for my work and 1 of those ended up on mommy! She has a sinus infection that we are going to see doc about so maybe that will improve her behavior.

Learning to sleep-AGENIS

Wow! Here we are so excited to have Hayleigh Joy sleeping without waking up during the wee hours of the morning and yet finding ourselves waking up still. I honestly did not realize how much of a struggle retraining ourselves to sleep again was going to be. Most thankful for the challenge for sure! Just a surprise. If Hayleigh would stop setting the wake timer on the living room television to turn on at 2am it would probably help! (just sayin) I woke to the pshshshshsh...sound from the snowy tv. Treading cautiously cuz I was worried I was going to find a little blonde girl sitting in front of the TV saying " there here". Thankfully not the case so I shut it off and went back to bed!

Until next time...

Sleeping Again!!!!

YES you read that correctly! We are sleeping through the night for the first time without a wake up in 2 nights! Acebutolol (beta blocker; here is the link...http://jmg.bmj.com/content/40/1/74.full.html#related-urls) Thanks to Shannon our new friend who has a daughter also Taylor who has SMS. The daily dose in the morning is doing its job of helping her sleep at night and improving her overall demeanor during the day. The other medicine was making her way too sleepy all day and doing nothing for sleep at night.
Hayleigh Joy continues to enjoy school and sleeping certainly is helping. We are making all kinds of sounds now,but still no words as of yet. We will continue to encourage her and pray she develops a decent vocabulary some day. She loves to give kisses! She has figured out how to put her lips together and give a kiss. So cute!
Thanks for your continued reading and I will continue to try an update more frequently so that you know better how to pray for her. Time to go get some zzzzz myself! Night all.

Until next time...

Trial and Error

Since my last post about not sleeping, little did I know that was the beginning of a new phase for Miss HayJoy! She has not slept through the night without waking once between 12am and 2:30 and then again between 4am and 5am! OUCH!!! Still working on the "grump" thing with me. I Sloooooowly getting better with it.
We just recently began working with a peds neurologist Dr. Burdo-Hartman, who has trialed catapres to help Hayleigh sleep and that only seem to encourage to sleep more during the day and did nothing for night time sleep at ALL! We feel it made it worse. NOW, beginning tomorrow we are going to trial a beta blocker therapy (acebutolol) daily starting tomorrow (11/4/10). We give a dose in the am and wait to see if it helps calm the mood and encourages sleep. From the study done of 9 kids (yeah u read that right only NINE kids; just shows u how few of us families there are and how under studied this syndrome is.) it proved to help reduce the amount of melatonin (the stuff that keeps u asleep) produced during the day hoping to have more available for night time sleep. We shall see! Please pray for us and many other SMS families around the world that they will find something that works for sleep. I can honestly and truly say I do not wish lack of sleep upon anyone including my worst enemy.(which is proving to be myself right now cuz I don't sleep) I hate me without sleep!

Until next time...

Can't SleepAGENIS!

Well a thunderstorm rolled through around 12a today causing Hayleigh's lil sis to wake up. That naturally began the reverse dominoe effect of wake up. Hayleigh, then daddy followed by mommy! Daddy risked life and limb to lay in bed with Hayleigh who might I add was unsuccessful at getting her back to sleep. (ugh)
As you can see by the time of this posting ( ODark :30) that I and mommy. ( who is handling this much, much better than grumpy ole daddy) I think being up with a toothache would almost hurt less than this does! ( hey I really like to sleep!)
Mommy is an amazing person. She has Elah in her lap with a bottle and Hayleigh watching cartoons like it is noon day! Meanwhile I am lying in my bed writing (cuz it is therapeutic for me and cuz this horrible human being needs lots of prayer) this post. Selfish? Yes! But, I needed to pause, take a proverbial deep breath and collect myself before I open the bedroom door to face the early start to an already goofed up day! Oh did I mention I am waiting for the benadryl to kick in? (no not for me! Although i was tempted)
BTW Hayleigh's overall health and wellness as been awesome. She is really growing up fast. Making more sounds!!! She has been sleeping great as of late. Which is probably why she is up today. I just shared with someone yesterday just how great she was sleeping. Oh well. This is to be expected and as mommy said she is not going to change so I guess I have to change. We know how much one likes that!

Until next time...

Heart is Great!

Good Doc Grifka said that Hayleigh is doing great! We did not have to have an echocardiogram done this time around cuz the EKG and chest X-ray were good! Praise God! Thanx for your continued prayers and support.
Hayleigh and her other 3 sisters (Chelsea, Rebekah, Elah) are going to celebrate their birthdays at our first Annual Alber Girls Summer Birthday Bash on Sunday July 25th. Looks like weather is going to be great! Lots of good food and great family/friends!

Until next time...