Happy Birthday!!! Today is Parker's 2nd birthday...looking back we've come so far in 2 years! We had cake and balloon fun last night after dinner. Video is from last night. Parker is walking everywhere these days. Forgive the lack of pants on the video, they didn't survive the cake eating...shoes are our new best friend. We are working hard on keeping Parker from pronating in while walking. Some days are better than others. If you had told me there was so much to consider when walking I never would have believed you. 10 weeks now we've been walking. I'm dying to buy the cute fishermen sandals, but of course they are "no-no's" as are crocs, flip flops or anything cute and flimsy. BAH. So, I have settled on PediPeds, they seem to be the most sturdy. We are celebrating life and lots of new milestones. God's blessings are abundant! Happy birthday my precious boy, we love you!!!
"God is able to do far more than we would ever dare to ask or even dream of, infinitely beyond our highest of prayers, desires, thoughts or hopes." Ephesians 3:20
we checked in at 6:45pm at Texas Childrens Hospital 21st floor..little did I know what we had in store! I knew these things were difficult, in fact the ENT told me, "most parents do it once and never again despite the recommendations for a study annually after age 1." I've had friends that had babies with apnea and they said it was miserable, even a fellow Warrior mom had one done last month on her son a few months younger than Parker...guess what they say is true "ignorance is bliss.."
At 7:10 we started the process of "hooking him up" with wires and sensors to the extent I have never seen before! 25 on his head alone!! To say this was a difficult task would be an understatement. He cried, angrily screamed, sobbed, to the point of exhaustion, catching breath, you name it for 1.5 hours. The tech kept telling me "not to let anything touch the wires" come on, the poor kid was desperate to be held close in a hug by his Mom. Or, better yet, get down and run around! She had to remark his head with greasy red wax crayon at least three times. She tried to find reinforcements, but that tech was "having trouble of her own," so we went at it one more time. I can promise you I was not leaving without a fight although the tech almost had me convinced it wasn't going to work. So, we "papoosed" him (nice way of saying tie up all arms and legs in a sheet) and we toughed it out. This was after she put shunts on both arms (like velcro casts with sticks) to keep him from pulling wires off. By God's grace we pulled it off and he was "wired." Don't let the pictures fool you, he may be smiling in them, but he was fit to be tied. He got about 10 minutes of play before we started while I brushed my teeth for the night.
Parker fell asleep quickly (not surprised) and he had 3 easy hours of sleep until midnight when he pulled the tubes in his nose out. So, we then spent the next hour getting those back in. He was trying to sleep through it all, but we had to wake him and crying commenced again. After three tries we finally prevailed and some "super sticky tape" was taped over what you see on pics. Asleep again...ahhh..then at 3, 4 and 5, the machine that read the nose wires (CO2) kept stopping so wires had to be replaced. Parker slept through this fortunately.
At 6am, we were told "test is complete!" "Gee, how rested I feel!" LOL, Then came the "cleanup" of stickie tape which I'm still working on this pm.
So, the tech asked me several questions (part of the study): 1) did he sleep here like at home? ME:Ah, NO, we never wake up at night nor have intentional torture before sleeping... 2) how long do you think it took him to fall asleep? ME:5 minutes SHE:Something like that she says, it was really fast..not surprised, he is easy to put done to bed, but after all that emotion it probably wouldn't have taken a minute! 3) how many hours do you think he slept? ME:6.5, SHE: no, more than that. ME: well, test was 8 hours, minus 1 hour in middle of night, and other "issues" maybe he did sleep more, but....
we will get results in 72 hours, but what she did say was his REM was impressive, I tried to get %, but she hadn't figured that out yet. She wanted to know what we were doing differently.
So, do I recommend the study? Well, I do, but be prepared. I will also wait to see what results say to make my final opinion. We don't suspect apnea and if test confirms that he does not have apnea, I might be inclined to "trust my gut" and pass on that annual study. Problem I see potentially with our study is Parker was so upset, his nose ended up getting stuffy, so is that a good time to take the test? How do they measure all that stress in the results?
And, to top all of this off, I learned they watch you all night! Creepy for me, big balls on ceiling with cameras. Needless to say if they had studied my sleep they would have known I wasn't sleeping a wink!
Gotta love this precious boy, smiles even in the midst of tortune..Papa Smurf look out!! "gee MOM, why can't I bend my arms, waving and playing is hard with these things on!"
Tomorrow evening Parker and I will check in to the luxurious "sleep center" at Texas Childrens Hospital where we will spend the night in hopes of having a successful study done on his sleep. Yes, the sleep center is the actual hospital. I have found that while there is a plethora of sleep centers for children 6+ and adults, no other facility can accomodate babies. Also interesting to note is that there is an 8 month waiting list for these studies at TCH! WHOA! I was blessed and I have a precious friend that helped us hit the top of the wait list, so here we are ready to go.
Why a sleep study? This was not even on my radar screen until a month or so ago. I'm part of a group of "warrior Moms" that are up to date on the leading research and helping drive cognitive research. These Moms are some experienced ladies, they know the science inside and out and they have older kids so they have experience and answers that I have found diffcult to find in this journey. So, these ladies found that perhaps sleep is even more important that we give it credit. During sleep the GABA receptors change whether the child is sleep deprived or well rested. What I also learned is that even though I think Parker has NO sleep issues (doesn't wake at night, is quiet as a mouse sleeping, has terrific consistent sleep patterns, isn't lethargic during day time) many parents think their child has no issues, but they really do. See this quote from Cincinnati Childrens,
"They found that in general, parents of children with Down syndrome significantly underestimated the severity of their child's sleep disturbances. Overall, 69 percent of parents reported no sleep problems. Yet, 57 percent of children expressed abnormal sleep patterns. In the children with abnormal sleep study results, only 23 percent correctly predicted a problem. In a previous study, only 32 percent of parents suspected their child had obstructive sleep apnea, despite a 100 percent incidence of abnormal studies.
There is concern that an excessive number of arousals may lead to fragmented sleep and sleep deprivation. Excessive sleep arousals and sleep fragmentation have been linked to symptoms usually associated with sleep deprivation such as daytime sleepiness, lack of energy and lack of initiative.
Increased arousals have been associated with decreased neurocognitive abilities and lower results on IQ testing. It has been suggested that the increased arousal rate seen in children with Down syndrome may affect their daytime function and could exacerbate learning or behavior disorders. In children with Down syndrome, behavior and learning disabilities associated with sleep loss tend to be overlooked and assumed to be associated with the limited intellectual abilities associated with Down syndrome."
Out of a group of Moms I talked to that had the initial sleep studies done at 2-3yrs, 5 of the 6 kids had issues when none thought they did. When I questioned Parker's Drs, the response was, ENT, " yes, National DS Society recommeds sleep study annually at age of 1 and older." Hmm, then why am I telling YOU I am doing a sleep study? Pediatrician.. "I'm not concerned, but I'm happy to order one." ENT said most families do it once and never go back since it is such a nightmare and then of course there is that little thing of the 8 month wait list! Seriously? What if I really thought Parker had a serious problem? How do YOU feel if you don't sleep well for a few days? IQ goes down a lot, right? I'm not excited about the hospital stay myself, but chock this up to a preventative visit and a pretty darn important one in my book. What we also learned was that giving ginko in several doses during the day rather than one dose effects REM sleep. This is BIG. Go goggle pubmed if you don't know what I'm talking about. Ginko has a half life and what we learned was that the kids are inhibited again without the continued dose during the day.
Parker's Urologist appointment was this week too, let's just say we have to visit TCH again in the near future. Again, until we saw the holistic MD no mention of issues. What we learned is that with "100% certainty" Parker needs to have orchiopexy to help descend his testicles. There, too much information, sorry! What amazes me is most kids have this repair done before 2 years. More a concern about forming memories of this procedure than the other concerns some might have about this issue. Both his pedi and his endo knew this was a possibility. Again, when asked pedi.."I'm not concerned.." Endo, "if not dropped by June, you will need a specialist." So, being the type-A person I am, decided I will see specialist now...asked him if he thought it would change by June, "I can tell you with 100% certainty it will not." Well, at least he's confident, right? He did say it is minor procedure, day surgery, so unless cardio is concerned we should be in and out quickly. He said no rush, but better to do it sooner so we don't form memories of procedure. So, guess we will add that to our calendar too in the next few months.
I'm not crying in my wheaties, just posting this so others can be sure they are vigilent. These are not big things in the grand scheme of things, new for us, but we are taking them in stride. This little one sure makes us grateful and thankful!!
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.Jeremiah 29:11 Our unexpected journey with Down syndrome, babies with heart conditions, T21, and AVSD.
Lara, 40 year old wife to Michael (married 17 years, best years of my life)! Mom to 4 wonderful kids! Taylor, 11, Mallory, 8, Madeline, 6, and Parker born 5/23/09. We found out after delivery Parker has Down syndrome and a complete AVSD. He was scheduled to have open heart surgery at 4-6months, but God intervened! His surgery was postponed until July 2010 and God healed his VSD hole in the process. So, on July 20, 2010, Parker had open heart surgery to repair his transitional AV canal defect. He was in ICU for less than 24hours and home in 72 hours. We never looked back! I own an Executive Search Firm focused on Accounting/Financial placement (used to work in Big 4). Actively involved in my kids activites and school; all are competitive swimmers and son Taylor plays tournament baseball. Girls do tumbling as well. Avid runner and boot camp fanatic. Used to be a competitive figure skater growing up. LOVE to shop, ebay/etsy crazed, addicted to Starbucks non-fat lattes, a child of the KING, thankful that we are saved by faith and grace!