Monday, June 29, 2009

Meds and the Lake

Last week, we ended up taking Taye back to the pediatrician because it seemed like he was working on an eye infection and we wanted to make sure we would have time to clear it up before surgery. The doctor wasn't sure if it was an infection or not...but we ended up with eye drops anyway just to be safe. Also, a slew of other things were found that wouldn't normally be a big deal...but they are since we're trying to avoid missing surgery again. So, as a result we're now giving Taye five different medications. This isn't ideal to us at all, but we're just trying to get that surgery to happen in a week and don't want to give them any reason to cancel it. And, of course, the eye thing hasn't cleared up so now we're off to an ophthalmologist tomorrow. My life is now completely consumed by all this nonsense.

This weekend, we spent four days up north with all of my family. My Grandpa's memorial service was on Friday and it was excellent. The rest of the time we spent up on Heart Lake. We stayed in the house next door (actually 12 of us did) and everyone else was in my grandparents house. It was a blast. The weather was perfect and we spent a lot of time down at the lake swimming...and working a bit too. At night we just hung out with everyone and talked. I can't think of something my Grandpa would have wanted more than to have the entire family up at the lake enjoying themselves.

My cousin Jessica getting ready for a boat ride w/ the kids

Taye's first swim in Heart Lake!

Mom & Aunt Jan w/ Taye

Enjoying coney dogs (one of Grandpa's favorites!)

Benjamin, Isaac, Dad, & Uncle Bob working on the beach

Tuesday, June 23, 2009

...and then a hot air balloon landed on our house

This picture has not been altered in any way.

Well, maybe it didn't land on our house, but it certainly caused a lot of excitement in the neighborhood last night.

Friday, June 19, 2009

Back on

We have a new date for Taye's surgery...July 6th. It kind of stinks that it is so far away again, but it does allow us to participate in other events (my grandpa's memorial service & a wedding in Chicago) over the next few weekends. It also helps that I don't have a date to return to work now, so we won't have to worry about that. We were already having discussions about what to do come August anyway.

Other than that, I'm now adjusting to having two kids with me all the time. We had still been sending Mikias to daycare a couple times a week, but that is now done for the summer. It would help if it stopped raining constantly. Mikias really, really needs to go outside and I'm running out of non-TV indoor entertainment options.

Tuesday, June 16, 2009

Things that make you go hmm....

Well today is a new day!

Benjamin took Taye to the pediatrician. She said he is not congested. He is just Taye. So, we are now back to trying to schedule surgery. No details yet. Hmm....

Benjamin was also able to do what he needed to do to sign up for unemployment. So, he is now being paid to stay home. Not a bad gig! Hmmm....

I went back to work today as my teacher pals were off. As you can tell, this is a first for me. Hmm...

I don't feel like I am stressed, but the dentist told me last week I am grinding my teeth and I have a twitch in my eye that won't go away. Hmmm...

Thanks for all the phone calls and posts...we really are doing fine.....just find ourselves pondering often about recent events. Hmmm...

Monday, June 15, 2009

False start

To say that today has not gone as planned is an understatement.

Joanna and I made sure Taye was fasting, we packed up for a hospital stay, we made it to the hospital on time and into the pre-op area....then things stalled. The anesthesiologist heard Taye's congestion (which he's had since we met him in April) and thought that he was coming down with a cold. We explained that he's had this checked out and everything has been OK. But, the doctor said he was being conservative and cancelled the surgery. He was concerned about him having an infection that would cause issues post-op. This is a little frustrating since I think that this is nothing...but we understand if it is a problem. Needless to say we now don't know when surgery is. We have to do some follow up w/ our pediatrician to resolve this and hopefully reschedule soon.

The most frustrating part is that my grandpa's memorial service was scheduled around this surgery so that we'd have time before we had to travel up north.

And, on my way home I got a call from my work and I am now laid off.

What a weird day...what a weird couple days.

Sunday, June 14, 2009

Today and Tomorrow

These past few days have been full of emotion. My grandpa, who has had Alzheimer's disease for many years now, has been dying for several days. He passed away this morning. Fortunately, we were able to spend some time with him during these days. In fact, yesterday we took the boys to see grandpa for one last time. Although all he was doing was sleeping, Mikias talked to him and held his hand. And then when we left my mom helped Mikias put the sign of the cross on grandpa's forehead.

I'll definitely miss my grandpa. Although the disease had already taken so much from him over the years, he remained as charming and personable as ever. So many of my fondest memories of my childhood involve the things grandpa, Peter, and I did. Luckily, I'll always have those memories and they will always be a part of me.

Grandma & Grandpa singing and dancing - Christmas 2006

Grandpa meets Mikias - June 2007

Of course, amidst all this, Taye is still scheduled for surgery at 8am tomorrow morning. Even though there shouldn't be any issues at all, it does still make us a bit anxious. The surgery will last around 2 hours and he'll likely be in ICU at least for tomorrow night. From the neurosurgeon's estimation he'll probably remain in the hospital for a few days. We pray that everything is routine and that this is the last time we'll stay in the hospital for a LONG time.

Hopefully, we'll post updates on here after surgery so everyone is in the loop.

Thursday, June 11, 2009

Catching up

I'm attempting to "catch up" here on several weeks of news and activities. Definitely the reason we haven't been on here much lately is that our schedule has been pretty packed with doctor appointments and the general craziness that revolves around managing two kids.

First of all, Taye continues to do exceptionally well. He had a follow-up CT scan a couple weeks ago to see how things looked and to determine if he's ready for the second surgery. The CT showed that he still had some accumulated fluid, but nothing to be concerned about. The brain swelling has definitely subsided and, as gross as it sounds, we can actually feel the edge of the hole in his skull when we feel that soft spot. Also, the brain mid-line continues to improve and get closer to center. As a result, the surgery is a "go" and is scheduled for Monday morning. This surgery will just replace the section of skull that was originally removed and possibly drain some of that excess fluid. The neurosurgeon indicated that we'll probably be in the hospital 2 - 3 days. The one thing that will be watched closely is whether an infection develops from reinserting the bone...even this is not likely though.

We've had a couple good doctor visits to some specialists. First we saw a physical medicine doctor who directs the physical / occupational therapy for Taye. She was extremely encouraged by what she saw. It seems that most of the gross motor skill issues we're dealing with in therapy are a result of Taye's stay in an orphanage and not necessarily from the injury. Of course there are some other things that are injury related too. Overall, she indicated that Taye would be in some sort of physical therapy until he's 2. But, again, she thinks that he's doing great and will not have long-term physical issues.

To supplement the PT/OT that we're currently doing through Beaumont, we also got hooked up with the Oxford schools and some of the services they offer. After thoroughly evaluating Taye and creating a big report on him, they determined that he is eligible to receive PT & OT through the schools here. The only thing is that they stop services for the summer, but in the fall he'll probably go to PT/OT here once a week. So we'll probably just use this to supplement what we're doing through Beaumont starting in September.

This week we saw the neurologist. This was another very encouraging visit. Since there haven't been any issues with seizures and since he's on such a low dose of the medication, Taye will likely be weened off those meds soon. The neurologist wanted to wait until after surgery to stop the medication, but she thinks that he'll do just fine.

In terms of Taye's new "tricks"...he has several. He's started babbling a lot....dadada, bababa, stuff like that. This is good news because a lot of times developmental delays show up in speech. Most importantly, Taye has started to drag himself across the floor...I'd like to say "crawl" or "skooch" but it's definitely a "drag". His right arm does all the work right now and he's very successful at getting where he wants to go. The physical therapist wants us to encourage him to use his left arm too, obviously, and he loudly protests when we intervene. We'll get there eventually, but this is a good start.

Probably Taye's most significant trick is weight gain. He's now up to 22 lbs....just 4 lbs lighter than Mikias. He gained 5 lbs. in 6 weeks after leaving the hospital. Looking back at some of the pictures from early April, we think he was definitely a bit malnourished when we got him and he's catching up now. He may be the "younger" brother, but I don't think he'll be the "little" brother for long.

Whew...I think that's all the Taye news.

As for Mikias...he's loving the warmer weather. He loves being outside and throws a fit when it's time to come in. I took him to the zoo a few weeks ago with a bunch of people from his daycare and we had an awesome time. Of course Mikias had so much fun and used up so much energy that he eventually fell asleep in the stroller.

It seems like recently Mikias has begun to talk constantly and I've noticed he has a very, very good memory. He puts pretty good sentences together too. And he talks a lot about Taye and to Taye. He seems very proud to be a big brother. Of course inevitably Mikias seems to bring up the hospital, but I think it's because he had such a fun time playing in the play area on the children's' floor.

Last weekend we went up north to the cottage. It was really, really nice to get away for a few days and very fun to be up on the lake. We didn't do much other than just sitting around and playing at the park...but it was just what we needed.

Joanna & Taye hiking at Bald Mountain park (Taye's 1st hike)

Benjamin & Mikias hiking too

Mikias' mad bike riding skills (note the helmet protecting for head injury!)

Benjamin & Mikias mowing the lawn (for 45 min...seriously!!)

Mikias & Taye chilling up north

Joanna & Mikias on Heart Lake

Taye & Papa up north

Mikias' gotcha day gift...Benjamin played with it more

Monday, June 8, 2009

Mikias' Gotcha Day!

I know that we've got a million things to update on here with all the new developments, various doctors' appointments, and preparing for surgery.  Needless to say, we've been extremely busy trying to balance our new normal.

But, we'll put all that aside for now, because today is a very, very important day for our family.  It's Mikias' Gotcha Day!  Two years ago today we met Mikias in Addis Ababa and he joined our family.  We can't even imagine life without this awesome little guy.  He has enriched our lives so much.

Happy Gotcha Day little man.

Benjamin, Joanna, & Mikias - June 8, 2007

Mikias - June 8, 2009

In his own words...