Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, January 31, 2012

Headed out

Wow, we haven't had to go to Philly since August when Axel got his halo off. This check up is a combination of his 6 month post-op visit (we're really at 8 months!) and a trouble shooting visit to see why he's in pain a lot of the time. As much as we hope Axel doesn't need surgery again, we also don't want him in pain.

We'll be boarding in a few minutes so see ya in Philly!

It's scary

My parents are getting older. When did that happen?

My parents are in their mid 70's, and very active people. I can barely keep up with my mom and what continent she's on. Our family joke is if Mom doesn't answer her cell, she's probably out of the country...again. You all comment on how much energy I have (Dean laughs at this, since he knows the real truth!) but I am a sloth compared to my mom. (Dean is nodding his head in agreement.)

And my dad? He takes a 5-6 mile walk through the Chippewa National Forest every day, carrying with him one of his golf irons in case he meets up with a bear, mountain lion or wolf. They're no match for him! In the summer months, most days you can find my dad on some golf course or another or riding his motorcycle or landing a nice walleye in his boat! My dad has worked hard all his life, and provided well for us. I have to say though, for all the playing he does, his "retirement" probably looks very different than most people's.


But last week our family had a little bit of reality slapped in our face. My dad had a small stroke.

Lots of people have "small strokes", or even several of them. My dad's stroke was in the Pons, which is in the brain stem. This is the most important part of your brain. It is very densely packed with nerve bundles that carry movement and sensory information to the rest of the brain. It controls all the movement and balance within your head, neck and the rest of the body. It also controls your heart and lung function, along with all of your reflexes. Just one tiny area of damage within the pons can have dire results. The symptoms of a pons stroke vary depending upon which nerve bundle(s) is damaged. It could be as severe as death or quadriplegia, to "just" confusion and difficulty forming words.

In my dad's case, at the time of the stroke he was confused, slurring his words a bit, trouble saying certain words, and some nausea and irritability.  He doesn't remember that day at all. He still has severe fatigue (probably because his blood pressure is through the roof!)  and a little bit of a memory problem.  For me, the most concerning of the symptoms dad has left is his lack of appetite. I mean NO appetite.


I could go on and on here. I could go into detail about how freaked out I am about this event in our lives, and my fear of loosing dad and facing the fact that eventually I'll loose my parents. I could tell you that living four hours away from them is just too far and that because of that four hours and all the business of our lives my kids hardly know my parents. No, to go into all those details would have me sitting here in a puddle of tears at 1:00 a.m.

Instead I'll leave you with this picture, taken Sunday, of my dad meeting Asher for the first time.

Monday, January 30, 2012

Fun stuff

When the big kids are at school, Asher and I do some fun stuff, like work on his fine motor skills! Please ignore the construction mess in the background. I am counting down the d.a.y.s until this project is done!

Beautiful

God's gift to us is the most beautiful little boy. A boy who was lost in a see of other lost children. When you hold him, you know you're holding an angel.

God brought to us this 7 year old infant. While he takes from us, he gives us back so much more. Every day we experience the joy God intended a little boy to get from life. We get to see each new first, every discovery, happen at warp speed. Simple things, like being able to swing his feet while sitting on a chair, to hold the hand of his sister, to hug a dog. We get to hear squeals of joy when he hears water running and knows he can put his hands in it without fear of punishment, to see his face change as he tastes yet another new food and he smiles with pleasure.

He lays his head on your chest and his hand on your heart. His soul seeps through your body and finds your very being. All of our children are blessings, Angela and Axel included. But Asher is unique. He is beautiful. If you don't see it, if your heart hasn't been touched by him if give the opportunity, then there is something wrong with your heart.


Sunday, January 29, 2012

A word of advice

If your life is slightly on the complicated side, and your schedule very busy


I can 100% guarantee you

that gutting your kitchen will not  make it better. 

Next steps to be completed: the last of the wall removed, new beam installed, rewire kitchen,  removal of last of counter/sink/stove/dishwasher (Lord help me!) and new sheetrock up.

Saturday, January 28, 2012

Love'in Life!

Tonight Asher had a big pizza dinner. Ground up pizza, that is. When we were done he rubbed his tummy like he was stuffed, then walked over to the couch. Apparently he saw a spot that looked just perfect for a little boy with a full tummy. Our couch is squishy (and not always in a good way!) and it was a lot of work for him to get up there. It was odd for him, because he didn't have a dangler in his hand,  but it didn't take long to see why he claimed the spot as his.


Then we realized what we were REALLY seeing! This is the first time we've ever seen him...just...sit...without something in his hands, without being reminded to put his tongue in. Just like any other 7 year old boy.

Friday, January 27, 2012

Therapy

In the next couple of weeks we will start assessments for private therapy services for Asher. We're going to hold off on speech/feeding until after his surgery, but PT and OT are a go! I'm anxious to get him started. He's so eager to try new things!

Today I brought him back to OT and ST with Axel, so he could get used to the environment a bit. He was very excited about OT (particularly the swings!) and he got to play in the ball pit with Axel. It was fun to see Axel take on the roll of big brother, helping Asher do stuff!




Later we went to speech and while Asher was more interested in looking out the window, he was also very willing to imitate several new signs.

Feeding therapy is going to be his most critical need. I'm pretty worried about what's going to happen when his tonsils come out. He's going to have all this space back there that he won't know what to do with, particularly where swallowing liquids is concerned.

Right now Axel goes to therapy on Tuesday and Thursday afternoons. Angela was going at the same time but we just dropped it since it's interfering too much with after school sports. None of the therapists we need to see have open slots at that time so Asher will be going in the mornings. That means I will be making 8 trips to therapy every week. Well, that and I have to pick up Axel from school early in order to get him to his sessions. I'm just going to buy a cot to leave in a back room there so I can take naps. LOL

A couple people have asked me about school for him. I'm not even considering it at this moment. He is not even close to ready to detach from us and go to school. Not only that, but I'm still trying to get a handle for where he's at. Having said that, I reserve the right to change my mind on any given day! I have no idea what program he would be sent to if I put him into school this spring. If it's the same program Axel was in last year then no, I will homeschool him. We'll see how much sign language he picks up, and how his ABR results go, as to weather or not he'll qualify for the program Axel is in. But man, he is so physically small. Because his birthday is in October, if he started this year he'd be a kindergartener. If we wait until fall he'll be in 1st grade. He has a lot of learning to do between now and then. I haven't even started teaching him anything like colors or numbers. He's just not there yet. He's learning things like "Let's go bye bye!" and how a house works. We're doing little counting things like you would with any toddler "One, two, Threeeeeee" and stuff like that. Maybe now that he can see I can put a little more energy into learning other stuff.

Very concerning! Anyone with seizure experience please respond!

In a couple of posts I've commented that Asher does this funny little blinky/winky thing at us when we tell him no, or to do something he doesn't want to do. It just lasts for a second, and it took me many tries to be able to catch it on video.

And then today happened. Today something is wrong. The morning was going along just fine and everything was normal. Asher and Axel were in the bedroom and I went in there to see what they were up to. That's when I found Asher with his face going crazy. He was grimacing and winking/blinking constantly. It looked very seizure-like. I was able to talk to him, but I'm very familiar with Angela's simple-partial seizures that she can also talk through. (not always making sense, but she can talk.) What Asher was doing was very different from Angela's seizures.

Having a son with Tourette syndrome, I would say it was very tic-like. It lasted for several HOURS. He went down for a nap a couple hours after I discovered it and woke up still doing it. Later in the evening it was gone, then showed back up about dinner time. By the time Dean got home from bowling it was no longer constant, but it was there.

I was able go get several videos of this during the day. The first is during lunch. Although he's interacting, he seems confused. Notice there are blinks, eyes rolling upward, and the mouth grimace to one side:


This was about 2 hours later as we got ready to go to therapy. He seems frustrated by it:


I've put in a call to have him seen by the pediatric neurologist. Of course I'm leaving town on Tuesday. UGH!!! I'll only be gone a couple of days, but still!

Edited to add: OMG, I totally forgot that I was told Asher was on phenobarbital for years for what I was told were febrile seizures. Ummm..."febrile seizures" are not treated on a daily basis. So, this little event makes me wonder if there is more to the story. Anyway, he'll be seeing a neurologist, but still this is concerning.

Too much cuteness!!!


I don't know if our house can stand any more cuteness! Look who got his new glasses!!!!

And is it just me or does he look like "Squints" from the movie The Sandlot?


Asher has been absolutely excellent about keeping his glasses on. The only time they've been off his face is when they've gotten bumped by something (like when he drags his head getting off a chair. LOL) I think because he's been so good about wearing them, I *think* he is already able to see with them. (he should have had trouble seeing with them at first since one eye was not functioning much and his brain would have to re-learn how to focus). Last night I was putting him to bed. He'd had two full days of wearing his glasses by that point. Anyway, I took his glasses off then he turned to walk to his bed. He FELT all the way along the length of his bed until he got to the headboard, then felt around for his pillow before climbing in! He's NEVER done that before, so I think his brain has figured out he can't see. LOL 

Now, just for fun, here are some more cute "new glasses" pictures from the last few days:

The very first moment he had them on. "What in the world?????" And yes, they look big for his face. That's so that he can't look AROUND them!

Watching Sesame Street. He can SEE it now! And, if you notice, he has a dangly thing, but he's not dangling it. ;-) Also notice one ear piece isn't even on his ear and he's leaving them alone! 

Mom, enough already. 

Ok, if I smile will you please stop? 

Thursday, January 26, 2012

It's Hairy

Our life. It's hairy at the moment.

Just a couple weeks before I left for Serbia, we decided to refinance the house and remodel the kitchen. (blog post about the kitchen designed for the kids is already in the drafts folder!) We have the best timing EVER! I knew I was going to dread becoming "basement people". The last time we did it, we were putting in hardwood floors on the main level and there was just Angela here. We spent a month in the basement, and it just about drove me crazy. That was nothing.....

Anyway, we signed a contract with the cabinet guy the beginning of January, and now the kitchen is officially under construction. This weekend the last of the cabinets, the ceiling, and the last of the wall between the kitchen and dining room will come down.

And you know how I mentioned that timing? Well our appliances have great timing too! We had to put 1/2 the money down for the cabinets when we signed the contract. The rest of the funds are sitting waiting to be paid out. The stove was the only thing we were replacing now, and it was ordered on Friday. We were going to keep the rest of our appliances and purchase new over the next year or so. Well, our appliances had other plans!

On Sunday night the fridge died. Just plain died. It's the 3rd time, and the last time the guy came out he said he wouldn't touch it again. Thankfully it's not only winter in Minnesota, but we've finally hit semi-normal January temps so the fridge food was able to be moved to the front step. I never realized how often I got to the fridge every day until I had to go out the front door to get the milk. LOL Anyway, Monday night found us ordering a new fridge. When we were ordering the fridge, the guy said that since we'd just ordered the stove on Friday, if we went ahead and ordered the dishwasher along with the fridge then we could get a package discount. Hmmmm....we had to think that one over a few hours. In the end, that's what we did. The only thing left to get is the microwave (ours has been working intermittently for a year now. LOL) and it has to meet certain measurement criteria based on the new cabinets. The stove will be delivered next week. I wonder where we'll put it? It can't go in the kitchen, and fridge is currently 1/2 in the entry and 1/2 in the dining room. And there is NO room in the garage! Why? Because yesterday the window guys were here to install the large basement window that was ordered back in September. They were also going to blow insulation in the attic. Apparently they didn't get the message that they CAN'T do the attic now because the kitchen ceiling is coming down. (see below) So the garage is now full of insulation in addition to all the other "stuff". While I was discussing with them what to do with the insulation, the new fridge arrived. While the fridge was being brought in and the window being installed, Asher decided to jump down the stairs. Nice. Fortunately I was 1/2 way up them and was able to lunge just enough to catch him by the arm so he didn't fall all the way down.

In two more days I will not have a stove to cook on. The plumbing will be disconnected and the power not yet connected. The cabinets are due to be installed the end of February, so that means I have one month to keep the kids out of the mess. Although the new stove will be here on Thursday, the floors will not be done and the wiring for the new stove will not yet be complete. Joy of Joys.

Amongst all of the mess are the normal daily routines that will now take place in the basement: Breakfast, dressing, doing hair, managing meds, managing dogs, showering, doing laundry, and every thing else that our family does on a daily basis. And of course, there is still the shuttling of kids here, there and everywhere. (and no, I will not blog about how I forgot Angela had floor hockey the other night and she scored her first goal EVER without me there!)

So lets add to the mayhem, shall we? Next week on Tuesday, Axel and I will leave for Philly to meet with his spine surgeon at Shriners on Thursday. Angela and Asher are both staying home with Dean. Well, Angela will be in school, so I guess it'll be Asher and Dean. LOL Oh, but Dean has a sales meeting one day while we're gone so Asher will attend his first sales meeting ever. YAY Asher!

Then there is Asher's upcoming surgery, which is scheduled for Feb 24th, followed by a weekend in the hospital. And, not ALL of the parents in this household will be in town. ;-) One of us is taking a much-needed vacation and it's not me. Unfortunately, because we're trying to get four doctors scheduled at one time, it didn't leave much (ok, not ANY) room for flexibility.

It's entirely possible that my posts over the next month will be a bit discombobulated, just like our house.

Tomorrow I need to clean out my car. Dean will not like to drive my car in it's current state. Pretty sure about that one. I also need to empty the rest of the kitchen cabinets in preparation for the crew coming on Saturday, take Angela to get a birthday present, shop for my family Christmas (What? It's the end of January?). Saturday run Angela to wherever, keep the other two out of the way all day/evening, Sunday Dean has to work a trade show, then my family's Christmas. It'll be a busy weekend!

Meeting the needs of The Least of These

My friend Gretchen, adoptive mom to Stas from Ukraine (along with several other kids!) is working with Chalice of Mercy  and Sisters Mission Outreach to gather medical and therapy equipment for an institution in Ukraine. She has been given the list of needs directly from the facility director. Please hop on over to Gretchen's blog. With only two weeks to pull it all together, there is a rush! Maybe you have something they could use?

Tuesday, January 24, 2012

The Koolaid

I don't drink Koolaid that you hand to me in blog comments, begging me to visit your blog when all you do is trash talk the blogs of others.  I don't drink beautifully photographed or rainbow colored Koolaid.

I don't drink anyone's Koolaid. I've learned the hard way that when 'everyone' is drinking the Koolaid there are often ingredients you don't want to know about but should. Read the fine print in every label.

Saturday, January 21, 2012

He's onto me

Axel is really fun to watch when he's involved in pretend play, but like many kids he stops the really fun stuff when he knows you're watching. So I've come up with a new tactic: Turn my computer to "sleep" and use the monitor as a mirror to watch what's going on behind me.

Tonight Axel was having fun with a bear. He had it sitting in a little chair and was feeding him just like I feed Asher. He was even trying to make the bear say "mmmm" before each bite. When the bear was done eating, he very carefully wiped off his face.

Dean and I were enjoying listening to Axel babble at the bear, but we couldn't see what he was signing to the bear so I did my monitor-as-mirror trick. It was very fun to watch.

Suddenly Axel moved the bear's chair so that he (Axel) was facing the dining room windows. He looked up at the window, found my reflexion. "Hi mom" he signed.

So much for the mirrors trick.

This Face

Just 6 weeks ago, the day before he boarded a plane for a trip that would take him 1/2 way around the world to an entirely different kind of life. Sometimes I look at this picture and wonder what was going through his mind. The mysteries his eyes hold that we will never know the answers to.



Friday, January 20, 2012

Helping around the house

Asher loves to help with laundry!


My friend Tamara posted on Facebook about her son Shawen using a Flip Fold to fold all the shirts in the house, and how much he loves it. I had just taken all the clothes out of Angela's closet and needed to go through them, but SHE needed to help. Being a totally unwilling participant, I thought maybe she would like this thing. But I'm a bit impatient and didn't feel like waiting for my order to come. As you know, you can find ANYTHING online, including how to make a flip fold for about a buck. 

When I got it done, Angela wouldn't even look at the thing, much less use it. Axel on the other hand? Umm yeah, he has claimed it for his own. (and yes, I have about 27 different colors of duct tape, which Axel loves.)

Now I'm going to warn you. If you have obsessive compulsive tendencies, this thing is going to feed right into that and either drive you crazy or make you happy as a clam. I am a little obsessive compulsive but with a very short attention span.  I was so excited to see how absolutely PERFECT it folds all the shirts to a uniform size just like they were sitting on a store shelf, that I started going all Dean's clothes. I got about 1/2 way done before I got bored with that project. Now half of his shelves look like a store, and the other half are a mess. 

Laughing

Asher LOVES the intro to Sesame Street, and I love his laugh!  If he hears the Sesame Street song he comes running.

Thursday, January 19, 2012

Our Story: How we got to today.

I had Angela when I was 28 years old. She was my 3rd biological child, and the fact she had Down syndrome was completely unexpected. I was only 28. Why would that happen to me? The fact Angela survived the pregnancy was a miracle, one that I've never taken for granted. We were raising 4 boys under the age of 10, and I always wanted a girl. I was ready for a girl! Angela was beautiful. The fact she had DS was really an answer to so many things that I'd wondered about when I was a teen and new mom to my boys. While her diagnosis was a surprise, I wasn't in shock. Somehow I'd known for years I would have a child with special needs.

Angela's dad and I divorced when she was 5. The boys and I moved to a small apartment in a neighboring town. We lived there for 18 month before moving a little closer to "the cities" so I could access better services to meet not only Angela's needs, but for my boys as well.

I'd been on match.com for a few months. I had certain criteria:

1. He had to be smarter than me. (per my mom's request.)
2. Non-smoker
3. Has to have a good relationship with all of his family members
4. Has to own his own home.
5. Has to have a bike (as in motorcycle)

I never knew when to tell the person I was on a date with that a had a child with a disability. I started using the information as a screening too. Sometimes I'd get an inkling about their attitude and spill it on the first date, like for shock value.  Other times I'd go on several dates with the person before mentioning I had a child with DS. It was like, "Well, this person is really interesting, and I hope they stick around, but I need to know this first." None of them had ever been in my house. Then there was K. who I dated for two months when I let him come to my house. While we had both talked about our kids a lot, I'd never mentioned DS. That night we were sitting on my couch and there were pictures of my kids on the way. "You have beautiful kids." he said, "Why didn't you tell me Angela had DS?" K. was a great guy, but he wasn't THE guy.

On August 22nd, 2003, I exchanged emails with a man named Dean. We decided to meet at a place 1/2 way between our houses since we lived 45 minutes apart. I liked to arrive a couple minutes late so I could check out the guy first before sitting down. I'd played the match game for awhile and learned I could see the creeps before I sat down. Anyway, as I walked up to the front doors, there was his bike. I recognized it from his description. I ran my hands along the seat. The butterflies in my stomach started flying.

I walked in and found him right away. We talked for hours that night. So easy. So right.

The next night we met again, this time closer to his place. There was his bike again. I walked up behind him sitting at the bar. He was smoking. I slid onto the stool next to him. "Your profile says you don't smoke." I said.

"No, I think it says I'm quitting."
We laughed and I said "Bummer. I really liked you but I won't date another smoker."

We chatted awhile, enjoying each others company. Somewhere in there he asked how long I'd been divorced. "Hmmm...well...we've been separated for 18 months but neither of us had had the funds for an attorney yet."
He laughed, "Bummer. I won't date a married woman. I don't care what the reason is."

We agreed that we'd hang out with each other, since we really enjoyed one another's company, but that's about it. "Wanna go for a ride?" he said? Riding together takes practice. Every person handles their bike a bit differently. Dean and I fit together perfectly on his bike. He drove just like my dad who I'd rode many miles behind. I already "knew" him based on how he handled his bike.

We rode together, or went out together, almost every night for two weeks.

I don't remember when I told him Angela had DS. I think it was the first date. Do you know what Dean did? He went home and googled DS so he could understand what it was. Still, I didn't introduce him to my kids. I had a rule about meeting family. Nobody meets my kids, and I don't meet the guy's family until I know the relationship is safe and I know they'll be around awhile.

Then one day he stopped at my place. He was so sexy when he got off  his bike. Just enough ink on his arms to attract me.

"So my brother invited us over to his house to watch the game."

"NOPE! You know my rule. I don't meet family. I have to know you're gonna stick around before I meet family."

"I promise the only people who will be there are my brother and his wife. That's it."

I didn't like passing up an opportunity to ride behind Dean. I gave it some thought. "Ok fine. But this is the only time."

Dean's entire family....his twin brother and wife, his younger brother and wife, his sister and her husband...and his parents....were all there. He really didn't have any idea. Word had spread that Dean was bringing some new girl so everyone showed up. (You know what they say about payback!)

During the afternoon his dad asked, "So how long have you guys been dating?"

In stereo we answered, "We're not."

To be continued.....

For Kathy..

For Kathy, who is mom to a little boy with DS and curious about the urology issues: This is not information I would normally put out in public, but how are other parents of little boys supposed to know about stuff if nobody talks about it? So lets pretend this is someone else's little boy I'm talking about. Mmmm kay?

The most obvious, an our reason for a visit to the urologist, is pinhole Phimosis. This is where the foreskin is sealed shut. In this little boy's  case there is a very tiny pinhole at the top (not the end, but the top) for urine to escape. Ballooning of urine inside the skin is a problem as well. He cannot pee a stream, instead dribbling everywhere. In some cases of phimosis the skin can be stretched over a period of months to enable retraction. In this little boys case that is not possible. The fix is circumcision.

Communicating Hydrocele. We didn't even know he had this, but once the doctor pointed it out to me (by shining a light on the testicle!) I can see it. A hydrocele is where abdominal fluid leaks through a channel down into the the sac surrounding the testicle causing swelling. It can be communicating or non-communicating. "Communicating" means the fluid moves back and forth from the abdomen to the testicle. "Non-communicating" means the fluid moved to the testicle when the testicle descended, but the channel closed off so the fluid is now trapped there.  A communicating hydrocele needs to be repaired because other abdominal contents, such as the intestines, can slip through the channel as well.

Because of the phimosis and hydrocele he is also much more likely to have another problem common to little boys with DS, which is hypospadias. However, because he has phimosis we can't see if he has this problem.

The exam was pretty simple, and Asher never even stopped listening to music on my phone. He just accepts whatever is dished out to him. He never batted an eyelash. While we were visiting with the Urologist I had a couple questions about Axel as well, who just happened to be with us. The doctor decided to take a quick look at him. He had Axel hop up on the table and I unbuttoned his pants. PANIC ENSUED!. The look on his face was, "What?? I was just along for the ride? What are you DOING? I saw what he did to Asher!!" When the very quick exam was done, Axel was throwing me death looks. I can't say that I blame him!

So using Dean's words when he so delicately stated his sympathy for Asher, "Oh man! His poor little Johnson!"

Building with the Boys

I asked Dean to put together a couple sets of shelves for me. He had help.







This picture confirmed our suspicions about Asher's vision! 
 








Must stop the work for kisses from Daddy!

Our other concern is Asher's hearing. He is constantly putting his face against things to feel the vibration. We have no idea if he does this because he doesn't hear well, or because it's something he did in the orphanage for sensory input. It could be some of both I suppose. He did not get a "pass" in either ear for his OAE screening. He'll have an ABR hearing test done when he has his tonsils out.

Wednesday, January 18, 2012

Question for fellow adoptive parents

What do you do when the "talking back" is non-verbal and not something you could make them stop? I'll have to see if I can get it on video (probably can since Asher does it 100 times a day.) In a way it's good because he's expressing his opinion, but I'm about done with his opinion! LOL

Do you see what I see?

Besides the very cute boy with the most kissable cheeks ever, I also see a pointer finger.


NOTHING!

Asher saw the dentist today for the first time in his 7 years. He doesn't have a single cavity! He does have molars that are ground down to nothing, some new molars coming in along with some new lower front teeth erupting, but other than that, things look good! He sat SO WELL in my lap to have his teeth cleaned. I was very proud of him. He's such a very good little boy.

The dentist will be seeing him in the O.R party we'll be having in a few weeks though. They need to get a set of X-rays and look at the roots of those lower baby teeth to determine if they're pulling them or leaving them alone.

Tomorrow (which is readily today!) we see the Urologist. He's the last specialist on our list and then we can get surgery scheduled! Here's a list of the possible ELEVEN things he'll be having done. ( I say "possible" because we won't know until that day weather or not he's getting teeth pulled, and the Urology experience WILL have two items, but #3 we won't know until that day either.)  Of all these things, only those with *'s will bother him afterward.:

*Tonsils (cuz they're massive and overlapping and he can't swallow solid food because of them)
*Adenoids (because that's usually just part of doing tonsils and they're probably huge too)
Bronchoscopy (to check for tracheolaryngeal malacia)
Endoscopy w/biopsy (to check for Celiac Disease)
Colonoscopy w/biopsy (to check for Hirschsprung Disease)
ABR (hearing test)
Dental X-rays
*Possible tooth extraction
*A 3-proceedure Urological experience (do you *really* want these details? I think not!)

I predict a week of valium. For Asher not me silly! Wait  no, me too! We have considered putting off several items, but of all them, the dental stuff is the only one I'd be willing to postpone. All the rest is necessary as soon as possible.

Oh, and we get to pick up his glasses this week too! Maybe we should start the valium now? No for ME silly! Not Asher!

Tuesday, January 17, 2012

Bath Time

This is the face I got the first time I put bubbles in Asher's bath.

Who messed with my bath?

To say he wasn't happy was an understatement. He wanted nothing to do with touching them, or them touching him. But then there is this mom who does the "you'll be fine" thing and throws them in anyway. The next day I put bubbles in the water again and he played with them like they were the best thing in the world!

Monday, January 16, 2012

Last Week/This Week

Last week was busy busy busy! Let me recap for you:

Monday-I can't remember
Tuesday-therapies
Weds- International Adoption Clinic. 17 vials of blood drawn, referrals to additional specialists.
Weds-GI doctor. Agreed that Asher is suspicious for Hirschsprungs. Colon biopsy and endoscopy w/biopsy will be done when he has his T&A
Thurs - Eye doctor for the AAA's : Asher needs glasses (duh) Angela and Axel need surgery.
Friday - ordered Asher's glasses. His eyes are terrible! TRIED to get social security number ordered. FAIL Need new copies of some documents that are in SERBIA!  Seriously? I gave them the exact same documents I gave them for Axel's SSN, and they didn't like them this time. Oh, and there's an error on the birth certificate that none of us...social worker, guardian or myself noticed. Hmmmmmm Would love to retry this same visit in three weeks with a different clerk and see what happens. ;-)
Saturday: Dean and I went on a date. To an appliance store. It was heavenly.
Sunday: Dean and Tyler started ripping out a wall while I tried to take a nap. ;-) Basketball practice for Angela and Axel.

This week holds:
Monday: Lots of folding clothes. By Axel. School for Axel. Got lots of reading, writing and and a little bit of art in.
Tuesday: Pediatric Dentist for Asher, then home to do school for Axel. Have I mentioned I pulled him out of school. Not because school is a problem, but because Axel is just not ready for that much time away from Mom and Dad. Therapy for Axel and Angela in the afternoon.
Weds: Urology appointment. This is the last specialist we need to see before scheduling surgery.
Thurs: Therapy for Axel and Angela.
Friday: No clue, hoping for a nap. I sometimes plan naps days in advance.
Saturday: I believe there will be chaos here. I'm dreading it.
Sunday: More of Saturday, basketball practice for Angela and Axel in the evening.

Snow

Asher has seen snow before, but he's never seen it actually falling from the sky. Today you get to witness an orphan "first". Its rare that I catch them on video!

We getting into the car after one of our doctor visits when I turned around to find Asher a little freaked out! When he's unsure of something he's afraid to walk so takes little tiny baby steps, and he looks like he's going to cry. (he's not. He's only cried a couple of times since being home) The grunt is something he does when he likes whatever the new thing is. This was the face I constantly saw in the orphanage every time I showed him something new.

Sunday, January 15, 2012

I Missed It!

Oh my gosh, I can't believe I almost missed it!


I know you're here, because there are usually 300+ hits a day on this blog, and yet only 1-3 commentors most of the time. That's ok, because I know not everyone has the time (or desire) to comment, but I'd love if you comment on this post and introduce yourself! It's kind of like mingling at  party and finding someone hiding out a corner. C'mon out, It's fun!  So how did you find me? How long have you been here. What keeps you coming back? Do you have any topics you'd like to see here?

Can't wait to "meet" you!

Update: Family

(this is one of the posts that was sitting in my drafts. LOL)

So I've updated about each of the kids, and about my teeth, but I haven't updated about how we were doing as a family.

When I met Asher on November 22nd, I was a bit surprised at how "young" he was. If I felt that way, I knew Dean was really going to have to adjust his thinking before we got home. As soon as I got back to the apartment that day we got on Skype. "He's really young Dean. REALLY young. Go get Little Earl (our 18 month old nephew) and bring him to the house to help you childproof."

He didn't do that.

So when Asher and I came home, that very first morning was a bit like putting a bull in china shop. And, Asher is pretty good about stuff, really only touching things that have dangle potential. But there was the diapering, the feeding, the general supervision required of a toddler, that we just weren't prepared for. Then the supervision of all the kids (that we WERE prepared for) as we made sure they could safely play with their new little brother.  Plus I was very sick, and then we were all sick, and then I got sicker. I couldn't even start the long list of Asher's specialist appointments.  It took us a couple of weeks to find our groove, and now I can say with confidence that we've found our new "normal". The house has a routine, the kids are used to one another, the play is mostly safe, Dean has relearned now to change a poopy diaper, the dogs don't care about the poopy diapers anymore, the visits to specialists are almost done, and in two weeks we'll get into a different groove. One that requires fewer trips to doctors every day.

So we've adjusted now, and we are absolutely loving our life with Asher. He cracks us up 75 times a day, and even Axel, who had the most difficult time with this new little brother, is beginning to bond with him. They've been playing together all morning.

My Job as their Mom

Tonight I was reading another blogger's post about conversations with their newly adopted child. A child who has only been home a few months.

My heart ached.

Axel does not yet have the language needed to ask questions about his world. Think of any other 6-10 year old. They are FULL of questions. Angela asks a million questions every day. But Axel...Axel can't ask questions. I have to listen in my head for the voices of my older boys when they were his age. What questions would they have asked? Then I try to answer them in the form of running commentary about whatever we're doing at the moment.

It's exhausting, and I have to say I haven't been very good about it lately. I feel like I've let him down, this boy who wants to know all about the world.

And what about Asher? I feel like I haven't been doing enough. He needs the whole world labeled for him like an 18 month old would. I need to get back in the habit of labeling every object I pick up. Every thing that I'm doing.....but do it all in sign. I have to. It's my job. It's the only way my boys will learn language and be able to express it.


At the dinner table Axel's chair faces the windows. A couple weeks ago Axel said, "Mom." and pointed outside. "Black".  

"You're right Axel, it is dark outside. It's night time." He has no idea those little tiny lights in the sky are called stars. 


Asher is such an easy boy. If left to his own devices he would spend his day laying on his side (so he only uses his good eye to see) dangling an object or banging it on his tongue. I have to say, there are days where he spends too much time doing this and I let him. He's easy to engage if I make the effort to do so. He WANTS to be engaged, he just doesn't know how to do it on his own. It's my job. My job to keep him part of this world as much as possible.


It doesn't feel like just being part of our family, learning our daily routines, etc. is enough. I feel like I should be doing MORE. More of everything. I need to take both boys, particularly Axel,  more places to see more things that are all things he should know....


What is a farm?
What is an apple orchard?
What is a dump truck?
What is a hammer?
What is a paint brush?
What is a bakery?
How do you dribble a ball?
How do you draw a person?
What is a sewing machine?
What do freshly baked cookies smell like?
Does Pizza only come in a box?
Where does meat come from?
Where do eggs come from?
Where does milk come from?
What is money?
What is a car wash?
That is a broom, but what is the thing called the dirt goes into?
What is a scooter?
What are those lights in the sky at night?

There is so much....so so much.

Saturday, January 14, 2012

Let's go walking

In my post previous post I said I had a lot of posts in drafts. Wow...I have more than I thought. I decided to finish up some of them and bring them back to life. This one is from July 2011:

The other day kids and I took a walk through the nature preserve right next to our house. The last time we were there was early last spring, right before Axel's surgery. Walking through dense brush and tall grass really wasn't possible, nor very fun, with Axel in a halo.

It has been really tough to get Angela outside this year. Like much of the rest of the country we had record temps, and with Angela having anhydrosis it just wasn't possible for her to be outside. Then in July we bought her a new cooling vest. She can even be outside when it's 100* now, when the rest of us are sitting like damp lumps not wanting to move. Axel couldn't be out because the vest of his halo was encased in lambs wool




We found the remnants of a HUGE snapping turtle. I wonder how old it was? Angela was disgusted, Axel was fascinated. He's still trying to understand "turtle" so to tell him "dead turtle" is far beyond his level of comprehension.

As much as I hated Axel's neck brace, I loved when he wore this shirt with it. It almost looked like the brace was part of the guitar on his shirt. LOL


The could care less if I can keep up or not!

A Bloggy Award

My friend Hevel over at  KosherKola gave me an award. Fun! I haven't gotten a bloggy award in a long time.


The rules are pretty simple: Post 7 thing about yourself that your readers wouldn't know about you, and pass the award onto up to 5 other bloggers.

Hmm...I'm such an open book, it might be hard for me to come up with 7 things people don't know about me. (The last time I did something like this I shocked a couple of people and I think they stopped reading.)

1) I detest entertaining. Wait, no...that's not entirely true. I don't like the preparation part of entertaining, and I'm terrible at the hostess part of the job. You know, remembering to offer people something to eat/drink, etc. I'm more of a "There's the kitchen, help yourself" kind of person. Really though, I think my dislike of entertaining goes back my inability to cook. When I met Dean, I had this sign in my kitchen:


That sign is no joke and very much true. It's still hanging in my kitchen.

2) I have 31 blog posts in draft which will probably never be published. Some are controversial, some have far over the TMI line, and others are only a subject line with a couple of sentences. Those particular posts, the ones with just a couple sentences, usually come about after a life experience when I think, "I SO need to blog this!" Then I get a couple sentences down so I can remember the thought and come back to it later.

3) I dabbled in watercolor art once. Here's the first watercolor I ever painted.

Two days later I painted this one. When I was 1/2 way through the artist who was teaching me told m I picked on of the most difficult pictures to do because there is skin which I guess is hard to do!

These were done under the instruction of an artist. He helped me understand the mixing of colors, etc but they were painted 100% by me. My mom, who is an incredible watercolor artist, was impressed, and bought me an entire set of materials, including canvases. Hmmm Maybe I'll dig those out again.

4) I once, in a small town in south central Minnesota, I layed in the middle of the street laughing hysterically. Don't ask.

5) I have a bucket list. All the things on the list involve conquering my biggest fears. I used to have a "before 40 list" but that is long gone. (and I've done all of the things on the list!)

6) I'm really painfully shy. No really.

7) I'm also a fairly decent actress. (this goes back to #6) and when I was in high school I learned to "fake it" that I'm not.

Ok, now to pass this award onto 7 other bloggers. Most of the blogs I read right now are adoption related, but since this is a "Versatile" award, I'm going to try to spread this around.

1) Jennifer at A Difference To This One. Jennifer is mom to 6, 5 of whom are adopted. Jennifer has been really good at keeping things "real" on her blog. And, not having any real experience with Down syndrome, she and her husband stepped out on a limb and last spring brought home two little boys with DS from Bulgaria. Their path has not been easy, but I love reading about their journey.

2) Kate over at Teaching Learners with Multiple Special Needs. This is one of the most useful to me blogs I've ever read. If you're looking for ideas of things to do with your unique learner, Kate's blog is the place to go! She posts almost daily too.

3) Dan Niblock over at Down with Oz. Blogging dads are hard to find, and Dan is a great reader. He also needs to update his blog!

4) Laura over at The Organizing Junkie. I'm a new reader over there, and I love it! Like she does a lot of people, I'm sure, Laura inspires me to....to...to do SOMETHING to fix my life and my house. But her site is more than just a blog, its a place where you an glean all kinds of information to help you fix your house too. Go have a look! (there's also a button for her site on my left sidebar)

5) CraftFail This is a site where you can submit your failed attempts at being crafty. It makes me feel so much better about myself. I don't know if they'll want me award over there, but I'm giving it to them anyway.

Thursday, January 12, 2012

Three appointments down!

Wow, it's been a busy week and it's not even over yet! And although tomorrow was supposed to be a "free" day, I had a feeling it wouldn't stay that way. I was right!

Weds we went to the International Adoption Clinic at the University of Minnesota. We really like Dr. Eckerley! She also saw Axel when we brought him home last year. He was the first child with Down syndrome they've had come through the clinic.

The doctors at the international adoption clinic are very knowledgeable about the issues faced by adoptees coming from various countries around the world. Each country has a certain way it treats it's orphans and some give better care than others. Also, certain countries are known to have poor diets, certain parasites, or high incidence of this or that. Also, when being seen through the IAC, it's very common to find the child needs referrals to various specialists, and I've found this is the fastest way to get into them! The last thing is it's comforting to be around medical staff who "get" that this child is working on bonding and to not fall into the "Oh he's so cute!" thing. I don't have to worry about stopping people from hugging him because if I can't intervene quickly enough, they will turn him back to me and remind him that hugs are for Mama only.

Asher had a very brief developmental assessment done by the OT.  VERY brief. It's really to get a general idea where he's at, but mostly to have referrals written for therapy services. I was correct in my guestimate of Asher's developmental levels. He's right in the 6-12 month range for fine motor, 12-18 months in gross motor, with some splinter skills up to the 24 month range. He was given referrals for ST/OT/PT and feeding therapy. The feeding therapy won't be started until his surgery is done and he's feeling back to himself. The other therapies....hmm...I'm not sure when is the right time to start them. The IAS usually recommends waiting until the child has been home 3-6 months so we can establish a good bond. I think that's probably about right based on how Asher is doing now. Also, I'm expecting surgery to cause a little bit of regression.

There were also orders written for a TON of bloodwork, but we also needed to see the GI specialist so this was put on hold until she could add to the list.

The GI specialist agreed that Asher needs a colon biopsy done to rule out Hirschsprungs Disease. Hopefully he doesn't have it. She also ordered blood work to test for Celiac disease, and a script for Miralax so we can start cleaning out his impacted colon.

She did also tell me that if Asher's Celiac antibodies come back showing celiac, and since Angela has the antibodies as well, it would be wise to put them on a gluten free diet.....even if they're not symptomatic. She kind of cringed when I told her Angela is a carb junkie. ;-)

Ok, can I just say right here and now, I am the WRONG parent to have a child on a gluten free diet? It involves lots of planning, not to mention cooking. I suck at both. Really. Anyone who knows me will completely agree with this statement. At this very moment in time there is no reason to go to such drastic measures, but that could all change with the results of Asher's testing. I'll be hiding under my rock until then.

Anyway, when the GI visit was done it was time for to get all that bloodwork done...17 vials worth! Poor Asher! But you know what, he didn't even BLINK. Nope. He is just so used to people doing things he has no choice about that he has NO fight in him. It's sad, really. I'd rather have him kick, thrash or at least cry. Wait...maybe not.

Today was a visit to the pediatric eye specialist. This was a new doctor for us and I really liked him as well. There were supposed to be two adults at this appointment, but we decided that Dean would go to work since it looks like he'll be taking off some days while Axel and I make a trip to Philly next month. So...lets go oldest to youngest, shall we?

Angela: Angela's vision is stable at the moment, but she is on the verge of needing bifocals. I know, right? I know lots of kinds younger than here who need them but it's usually associated with "older" kids with DS. When Angela was born she was completely lacking a tear duct on her left eye. The first time she had surgery on it was at 11 months, and she's had a few since then. The last time was to put a stent in when she was 8 or 9. That newly created duct just doesn't like to stay open. It's time to put a stent in again. Otherwise for now Angela is good and there is no need to change her glasses prescription. She was disappointed since she wants new glasses.

Axel: Axel's vision is perfect. Last year right after we came home we knew his tear ducts were completely blocked because he constantly has tears running down his cheeks. Unfortunately taking care of that problem had to take a back burner to getting his spinal fusion taken care of. Well, it's time to get it done. so Axel will be getting stents as well.

Asher: Oh, this is the appointment I've been most anxious for! I knew he wasn't seeing well, and I was right. Asher's left eye is significantly worse than his right, and the fact he has estropia and nystagmus in that one eye doesn't help. To compensate he's stopped using it and his brain has stopped registering that it's there. Tomorrow I'll be taking Asher to get his glasses, which I'm sure he will want nothing to do with. As we learned with Angela, when a child sees this way and you put glasses on them, they can't see any better with the glasses. It takes the brain as much as 6 months to realize that bad eye can now see and to start processing the information. The key to how long it takes is how long you can keep the glasses on the child, but trying telling a child to keep these things on his face that are interfering with how he sees! For now we're just going to try the glasses and go back in 6 months. Then if need be we'll switch to or add patching.

Since Asher will be having surgery sometime around the end of February, and since Angela and Axel also need their minor procedures done, I think I'm going to try something insane and schedule them all on the same day. Dean is going to have to take off work anyway, so it would eliminate days off if we can do all the kids on one day. Then he can take the other two home afterward and I'll stay at the hospital with Asher who will be in for a couple of days.

I think I'll call the hospital and see if I can get that suite booked now!

We were there for a total of 3 1/2 hours, but we did have a little fun while where there. For about 90 seconds we got to see our friends the Dickens who had an appointment at the same time. Micah is the cutest little thing! He's 4 and about 1/2 Asher's size. All the kids got to get hugs from him. (pictures lifted off Jennie's Facebook page.) I love when we get to run into friends!