A bit of an unusual Q&A this time around...
I had a 'new reader' e-mail me and ask if she could ask some personalish questions after reading through my blog from the beginning (which I give her a lot of credit for doing because I can't even stand to read that much about our lives LOL). So, after the Blogger Comment Questions I got permission to post some of her questions as well. Who knows, if one person wonders, maybe this will help answer someone else's questions as well :) Here goes...
(sorry, not a direct quote) Did you mean Blogger when you said it messed up your computer?
YES. I went to blogger.com and got their suggestions for redoing the blog so you can save it and it messed up ALL KINDS of things! So unless you know something I don't, don't use the directions from Blogger.com about redoing your template to save your blog!!
I enjoy that you post so much. Yesterday I put you on my reader and today you posted about 8 times...and the day is only half over!! Wow!
Um... I don't normally post that much :) Or at least I like to THINK I don't! LOL Actually, I'd not had much time to write things down the past few days so today was a bit of 'catch up'. Plus, Mike was home and I had help with the kids LOL
(for Emma's JAWS) How about a "teether" when she goes to bed, maybe one that vibrates?
We do have several things in her bed for her to chew on. We have those chewy tubes, the Ark grabber, and her favorites tend to be her baby doll's foot and a 'lovie' (blankie with an animal attached) which is an Elephant and she chews on the trunk... She'll also chew on bibs and such so it seems she prefers cloth over plastic/rubber... except when it comes to the tubing!!! She's not at a point of understanding "you can chew on this... but not THIS". Yet. So... we continue buying parts LOL . And by the way, the pulse ox he fixed doesn't work when she plays with the repaired part- which is exactly what she wants to do since it looks different *sigh*.
April Naretto said...
(Video of Dennis)What a great story and definately family. How old is Dennis and is he from the Ukraine also?
Dennis is just a few days different in age than Micah- he'll be 2 in September. He was one of Emma's roommates in Ukraine :) I had the pleasure of helping to find his family and I will forever have a place in my heart for Dennis and the entire Reed Family!!
How bout something like this (for Emma to chew on): http://www.theraproducts.com/index.php?main_page=index&cPath=6165_307786
We have the ARK Grabber and a Chewy Tube already, but she just doesn't know to chew them instead... I just ordered another tube of a different size to try, but the real reason I posted this comment here is because I love this website :) Hadn't seen it before, so THANKS :)
I had no idea that some booster seats could go up to 8o but only 40 with the harness. I bet Aysha's seat is one of them, she is misrable in her new booster seat, the botton part that locks in the harness hurts her legs :(
Some seats have adjustable 'crotch pieces' as well-- they have multiple slots on the bottom to move the bottom buckle so it doesn't hurt so much. I don't know if that would solve your problem or not but something to look into maybe?
Maybe you should get shirts made up that states they are not twins or triples!
What's funny is that my sister just brought all the kids "Twins" shirts when she came down to visit from MN, so instead, we just dress them all in Twins shirts and let them ask anyway :) :)
does Micah have to have surgery any time or did he escape that?
Micah's heart is just fine. He needs ear tubes and is getting those on Friday (7/18) but that's all for him... oh, and a little snip snip down south eventually but that appointment isn't until NEXT YEAR :( Love specialist appointments!
Do you use nasel saline on Emma?
Yes, we do. I used "baby noses" for a while and this time just replaced it with Ayr and I guess it works just fine too. And it was cheaper LOL. We suck out the nose, give meds, and hook her up to her machines each night. Poor kid doesn't exactly love her bedtime routine!
Many commented and questioned on the Micah's Rash Thread...
We are chalking it up to a minor virus or just heat. The pool didn't affect anyone else, I doubt it was eggs because of the distance between eating them and the rash (though that could still be it). He's not on any milk products and has been ok on soy for months so I bet that's ok. He may have an allergy to a vegetable since we just reintroduced them to him big time but that's one we'll just have to 'weed out'. It doesn't seem to bother him and has lessened- it's still bumpy but not as red and less area. So for now we watch it and if it changes too much we'll see what we need to do :) Thanks for all the suggestions and advice on that!
Some people commented on my More O2 questions thread...
I later posted but we found we could run the nebulizer through it or just run it a night without the humidifier. The O2 man LOVED the neb idea! Also, he suggested the humidifier might be contributing to her gooey nose. We did one night without the humidifier and it dried out the tubing fine-- and her nose/mouth/lip (not in a good way). Next time I'll try the nebulizer :)
I was wondering if you could tell me a little bit about what exactly having Down syndrome means for your 3 younger ones.
Having Down syndrome means that they will likely have slower development, a shorter stature, they are at a higher risk for some health issues (like the heart, Leukemia is higher risk, and then other more 'unusual' things like the neck instability (AAI), hypothyroidism, and a long list of other things that MOST kids with Ds don't have, yet the risk is higher.
I'm not sure if there are "degrees" of it or if it's pretty much the same across the board...
There aren't degrees of Ds, but each person is affected differently. There is some correlation to the use of Early Intervention including speech, occupational, and physical therapies and obviously Emma and Micah have missed out on these until now. So who knows what their potential "might have been" had they been appropriately interacted with since birth... Emma's life has been deeply affected by it since that was many YEARS spent in a crib with no stimulation. Micah may or may not have any severe long term effects of his early days' malnourishment and lack of stimulation since he was still so young when we got him.
In pictures, Brianna seems to be playing just fine and even though she's not walking on her own (unless I somehow missed that) she is using her walker. For Brianna, is it a matter of being behind for her age but able to catch up or is it deeper than that?
You're right, Brianna's not yet walking though gross motor is definitely her biggest struggle. Many kids with Ds walk near age 2. For Brianna she is cognitively and socially "close" to age-level and has been in a typical classroom for kids her age 2 mornings/week this past year and done well. She will age-up with them again. It's hard to know how she'll do as far as "school" and such, but for now the gross motor is the biggest gap between her and her peer group. Also, her speech is behind but she is able to communicate through sign, body language, and her receptive language is really good- so if she can't express something but you're able to ask her a question about it she will answer yes or no appropriately. I hope that makes sense :) For Micah, obviously being in the orphanage meant delays - as is the case for all kids regardless of health from what I've seen - and he was a tiny little guy when you brought him home!
Is there a way that Micah can catch up as well or get to where Brianna is in his own time, or is it more complicated than that?
I just keep telling myself that ANYTHING'S POSSIBLE :) especially for Micah! He's progressed so quickly since coming home that we joke that he might walk before Brianna does LOL Really, he's significantly behind in communication skills and the language transition likely plays some role in that skill taking longer to come for him than the gross motor stuff that seems to be coming easily. Many kids w/ Ds struggle greatly with speech, but at the moment Micah isn't using any cues other than crying and smiling to show his pleasure or distaste. Also, his fine motor skills are way behind since he was never given anything to even grasp before (wasn't holding his own bottle until just a bit ago even). Of course there's a possibility for him to catch up. Whether or not he'll make up for the time he "lost" or whether he'll continue to be a year and a half behind... we have no idea but I'd bet he'll catch up a lot.
And for Emma, it looks like her heart is the major priority from what I've read, understandably so.
Yes, definitely. We didn't see the point in pushing any 'agendas' for her such as introducing her to new people through therapy (she isn't so fond of new people, especially ones that want to touch her) since the medical field was intoducing her to so many new people and environments already. Also, since she's over 3 it's a different system for therapies and they haven't even scheduled her evaluation yet to start services.
At first, before I bothered to look at the videos you posted, it seemed like this little girl couldn't do anything but lay on the floor & stare... but in the videos I saw that she laughs, she smiles, she interacts... she doesn't look 5 but she has LIFE inside of her!
I'm so glad that the videos show that! That is exactly why I wanted to post them. The medical side, the delays, the transitions from crib to family, and the fact that her whole world's been rocked lately sure make an impact on that little one, but her smiles and laughter and sweet rubs on my cheek are worth it all. She does express herself WELL and is a real sweetheart.
Is there any way Emma will ever be able to care for herself or will she need care for the rest of her life?
Emma will likely need total care for life. She probably won't ever be able to walk distances, speak sentences, write, or read, but she may learn to stand with support, walk with a gait trainer (supportive device somewhat like a baby walker but different...), or even take a few steps or get around the house walking or crawling. She will likely learn some words and will learn to eat some foods (all bottle right now). She may learn to feed herself, to do some daily hygene like brushing her hair and teeth, and she has already begun to 'help' in dressing by giving her legs to me to put her pants on. We know she'll be with us as long as she's here on earth and we are blessed to have the joy of taking care of her.
I'm wondering why you & Mike decided to adopt. I understand that God led you to Emma & Micah, but how did you get on that path in the first place, especially with 2 kiddos already at home and at such a young age?
Both my mother and father's moms grew up to some degree in a children's home/orphanage situation. They both had a desire to adopt and adopted my brother at 14 (I was 15) and my sister at 16 (I was about 21). Mike and I began dating in high school and he was a part of the second adoption as well as the 'integrating' part of the first. Mike lost a brother to childhood cancer and both of us have always known we would adopt some day. After having Brianna and getting her diagnosis we took that as a confirmation that Yes, we could handle special needs. We'd always waivered about that because we are young and didn't know whether we could really make a "lifetime commitment" at our ages to a child. God knew our hearts and gave us a forever daughter by birth and solved that dilemma :) We are so glad He did! So we began discussing adoption when Brianna was almost 2 (August 07), knowing that domestic adoption would likely take about 2 years. I wrote an e-mail to Andrea just thanking her for her ministry with Reece's Rainbow and explaining that we were looking into domestic adoption of a child with SN in the near future. God took that and ran with it and by the end of August had shown us who we were supposed to commit to (through MUCH prayer). So, we really hadn't planned on adopting so soon- we thought 2 years out- but God had other plans and somehow by His grace we were able to be obedient! Somewhat neat as well because in filing our paperwork for the USCIS (homeland security) we found out that the US won't allow you to adopt if you're under 25 and I was 25. So we know that's another confirmation of God's timing that He brought this to us within 7 months of our eligibility.
Is there any word on anything related to Aleksa?
Andrea is working with one of the facilitators we use in Ukraine to see if we can build some relationships with her facility to see about opening the doors to future adoptions in that institution.
In your entry about carseats, you said something about considering waiting until after Emma's surgery. I do remember you saying awhile back that you were told that the surgery is very high-risk but it's her only chance (medically, without a miracle). What is that risk? Is it the actual surgery, while she's on the table, or is it something that happens afterwards?
The doctor that did the heart cath felt that there was too much damage to the lungs. It's somewhat hard to explain but I'll try. The heart has 4 chambers separated by a solid vertical wall (left and right sides are completely separate) and a valve in the center of each the L and R side. The heart brings blood from the body into the heart on one side and it gets pumped into the lungs. Then it comes back from the lungs on the other side and gets pumped out into the body. The blood pressure in the lungs is significantly less than the blood pressure in the body and the heart side that pumps into the lungs therefore has less pressure needed to pump it than the side that has to push the blood back through the body. With the AV Canal a lot of blood is flowing through that center wall. Since the one side has such a higher pressure than the other, the blood that has already been through the lungs flows back through the holes and is then pumped into the lungs again. This increase in flow causes the pressures in the lungs to increase over time, and the heart also beats harder and enlarges from the extra exertion. When the AV canal is fixed within the first year of life the damage is generally insignificant to the lungs. Emma's heart has been functioning this way for 5 years and since the pressures have gotten so high, the arteries inside the lungs have begun to thicken from the extra flow. What the cardiologist that did the cath said is that the arteries in the lungs are basically now so used to the higher pressure that when the holes in the heart are repaired, the pressure will go down within the heart and the lungs won't be able to get the amount of flow that they now need in order to oxygenate the blood and pump it through those arteries. Basically, they don't think she'll be able to come off of the heart/lung bypass machine after surgery. The surgeon, however, doesn't think that the damge to the lungs is that severe and is also going to leave a small hole open in the heart to continue to allow some backflow incase the pressures need it. He feels there's about an 80% success rate if he is correct about the lungs. This means 5 kids go in for this surgery and 4 kids come back out. Not a horrible percentage, but still not a GOOD one.
Are there areas I can pray over about Kristopher? Sometimes I wonder how he takes all that's going on or if he doesn't really even notice.
Kristopher is my little trouble maker :) We started the blog as an adoption blog so I try to somewhat stick with that and the adjustment of the two newest kids, but obviously I talk about K and Brianna too because I love them and they're a part of 'everyday'. Kristopher is working on and still needs help with the concept of bullying. He seems to think that because he's bigger things should go his way often times and takes over. We work on this daily, especially with Brianna who does it intentionally and also communicates her distaste to his attitude :) On the other hand, Kristopher can be very helpful, sweet, loving, and he really enjoys when Brianna will play with him and he likes showing his 'inventions' to the babies too. He pretty much takes everything in stride. He knows that Brianna needed her heart fixed, that Emma needed her heart and throat fixed. He knows that everyone sees doctors and he thinks of these as neat adventures because he's a social little guy and loves having a sitter for an afternoon- whether it's a friend from church or a grandparent :)
Is there anything specific you and/or your husband need prayer about that isn't already listed on your blog.
Thank you for asking!! It's difficult to find a balance between marriage and kids especially with a lack of sleep and added stressors like surgeries. We'd appreciate prayer for clear conversation and just knowing how to spend our time. Also, Mike's in master's level classes up until the heart surgery, working full time, and has a wife and 4 kids so his plate is VERY FULL. Prayer for him to be able to maintain all of his responsibilities and to feel good about his progress in them- especially at work where things can easily fall behind- would be wonderful.
A reader said...
I don't want to pry but want to know if you are ok with money. Lots of surgeries and hospital stays takes a lot of money even just driving and eating out lots and having babysitters. Seems like the adoption was just the beginning of the expensive stuff with those two kids. Do you have a medical fund set up?
Ah... the dreaded topic of finances. Let's just say that no, we don't make much and we don't have a whole lot of 'extra' to sling around, but we've never wanted for ANYTHING and God has provided the finances for every procedure, every drive across the state, and everything we needed in addition to fun things like the swings for the kids. We don't always know where it's going to come from, but it always does and it always works out. We don't have a medical fund set up and aren't asking for contributions for medical expenses. It may seem the adoption was just the beginning... but this is just one more way for us to hold tight to the knowledge that God doesn't give us more than He's going to provide for us to handle!
(By the way, I hate the saying "God doesn't give you more than you can handle..." Because YES, HE DOES! You can't handle it YOURSELF! He never gives us more than He's going to HELP us handle though, that's certain!!)