We were on a "blog break". Apparently, posting was something too difficult to keep up with as we poised ourselves to make it through the days. However, now that Thanksgiving is upon us how could I not take a moment and share my thanks for everything that has happened in our lives since last Thanksgiving.
Almost one year ago we received the referral our little man, Sintayehu. He was appx 8 weeks at the time and we spent days staring at his pictures willing him home. We are so thankful for the hands that brought him to the orphanage, the caretakers who did their best with what they had to care for him and Alemu who worked on our behalf to connect our family.
Fast forward a few months to the day we discovered that Sintayehu was not getting formula. We are so thankful at the response we and others received to help kids who live over 7000 miles away get the nourishment they desperately need. Since that day, over 500 lbs of formula have been sent over with various travelers from people who answered our call for help.
When it was finally time to travel and bring him home, we couldn't be more thankful to our parents who made the long journey with us to help care for Mikias and see their grandson's birth country....a gift like no other.
When we were in country...we had the best day of our lives thus far! On the same day, we had the opportunity to reconnect with Mikias' African Mommy in the morning and meet Sintayehu for the first time in the afternoon. We are so thankful she was willing to meet with us, play with him and join me in holding our son. And....our new baby. There is nothing more authentic than picking up your child for the first time and having his head nestle in to your neck. I am thankful every day that he is our son.
And of course just 14 days after the best day of our lives, came the worst. We can't even begin to express our gratitude for the depth of support that surrounded us. We are so thankful for the quick medical responses of the ER team, the skillful hands of a surgeon and the hours of round the clock care in ICU. Not to mention, the levels of people who lifted Taye and our family and held us so close for many days. We could not have survived something like that alone. We are so thankful for the strength given by our family and friends.
It is difficult to find words to show graciousness for the last 8 months of recovery for Taye. His medical team, rehabilitation specialist, therapists, school therapists and advocates have played such an integral role in his journey. We are so thankful for the careful attention given to one little boy. To aid in this, we have had numerous people support us in being able to attend to his needs and his aggressive schedule. We are so grateful to our family and friends for the countless hours they helped in watching Mikias, making meals and overall attentiveness to Taye. Being able to celebrate with others as he overcame each obstacle was wonderful. Thank you.
We are so thankful for health. We watched Taye grow from his starting point of not being able to bear weight on his legs at 6.5 months old to walking across our room babbling after a serious accident. We are eternally grateful for his spirit and resiliency. This little fighter has taught me more than I thought I would ever know.
On a personal note, I can't help but be very thankful for Benjamin. My husband is a man with an unwavering commitment to us. He easily supported my new position which created more responsibility for him. He eagerly took a paternity leave, as we decided, when Taye came home. (Despite the fact he encountered bit of discrimination from a few people who have things to learn yet) Most importantly, he became Taye's #1 advocate and medical coordinator. His stamina through all these months (with nothing more than a grimace when he was laid off) reminds me daily of someone else I have to be thankful for.
As this year is almost all said and done, I realize I am most thankful for the clarity I have in life.
Three of the four people in our house are napping right now, laundry is not done, we still have a suitcase packed under our bed from Africa (no joke), piles of paper are stacked strategically around the house---but hey, the basement is almost finished.
We had an awesome time this past Saturday at a picnic at Kensington for adoptive Ethiopian families. Although we knew most of the people there, we were able to meet a few new people as well. We were undecided about going, but once we saw how well Taye was recovering we knew it wouldn't be a problem. It was a perfect afternoon and it was fun to see all the kids playing together. We're so fortunate to be connected to all these people.
Taye and his new friend Daniel
Mikias with Samson and Zachary
Mikias getting some help from Sofanit in the sack race
I also need to mention how impressive Taye is doing. Within the past couple days he's even got a few new tricks...most significantly sitting himself up. Now his method isn't the same one he's been working on at physical therapy, but it gets the job done. He's also just started clapping his hands together. We're so happy that's he's making these improvements considering where he was a couple months ago. Judging from this video Mikias is also very, very excited.
After being transferred to the pediatric floor this morning, we spent most of the day waiting for the neurosurgeon to come and give us the OK to go home. Everyone that came in a saw him said Taye looked great, but we needed the neurosurgeon to officially discharge us. Finally, around 5pm today Taye was discharged and we are now home!! It's hard to believe that just yesterday morning we ate breakfast here...a busy couple of days to be sure.
The rest of the week for us will be good. Joanna has time off work and the best part is no more doctors appointments or therapy appointments to go to for the rest of the week What a treat! Hopefully, this will give us some time to get back on track.
Taye sleeping post-op yesterday...with his big hat
Taye tonight at home showing off his interesting haircut
As I'm writing this both Joanna and Taye are taking a morning nap. Last night was a bit restless, probably because Taye slept so much yesterday during the day. He didn't really sleep for a long time in a row last night...just 1 - 1.5 hours at a time. But that's OK because he seems to be doing really well. Yesterday afternoon he started back on his normal eating schedule and has been eating like normal ever since. He also doesn't seem to be in too much pain and has only been on Tylenol recently. I think most of his fussiness so far is just related to all the wires he has to contend with when he wants to move around.
So, it sounds like we'll definitely be leaving the ICU today to either go home or to the regular pediatric floor. We'll have a better idea once the doctor makes rounds today. I'm hoping for home myself just as long as they think his pain is under control and there are no signs of infection.
It's amazing to me that this has seemed so easy for us. Of course compared to April's stay this is much less urgent and, unfortunately, we have a comfort level with it now.
Taye is now in ICU in the exact same room we were in back in April. It's kind of strange being here again, but there's also some comfort in knowing the people here and how everything works.
Taye was pretty fussy when Joanna and I first saw him in recovery. He was extremely hungry and sucked down a lot of water and a little formula. It seems he has some pain, but now he's drugged up so he's sleeping comfortably. We'll definitely have our hands full when he completely wakes up though. When he was awake earlier he was twisting himself in the IV and monitor cables and rolling over all over the place. Not sure what we'll do to contain him, but we'll figure something out.
One of the things the neurosurgeon was talking about earlier was how the skull piece that was reinserted was actually dead bone. Once the skull fuses itself back together after a few months that piece should come back to life...amazing! There's already been talk of us going home tomorrow depending on how well Taye is doing and how well all the systems are working. We'll see.
The neurosurgeon just came out to let us know that the surgery is done and everything went well. We haven't seen Taye yet...it sounds like he'll been in recovery for a little bit and then we'll head up to ICU. But, everything was successful and the bone was put in place. We're anxious to see him and are so happy that everything has gone smoothly so far.
After spending a fun weekend in Chicago for Irene's wedding (fun...except for several meltdowns by Mikias), we're now geared up for Taye's 2nd surgery tomorrow morning. I think we're all very anxious to get this over with. It seems like this had been lingering out there forever, so it will be good to get it behind us and to continue to move through the healing process.
It should all happen at 8am tomorrow morning and we're hoping that this time there won't be any delays. I feel so bad that Taye is sleeping so peacefully right completely oblivious to what awaits him in the morning. Please send your prayers his way.
We'll update when we can tomorrow.
Mikias jumping in Chicago
Taye's last mohawk pic before we "evened out" his hair tonight
Taye's new cut...too bad it will only last one day
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
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.
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.
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.
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
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.
The past couple of weeks we have been settling in to our new way of doing things. I believe they call it...survival...yikes! All in all, things have been going well, but I won't lie and say that it hasn't been hard. We certainly did not anticipate how difficult it would be to juggle the number of doctors appointments and/or consultations we continue to have with Taye. Not too mention, the transition from one child to two.
I can sum that last sentence up in a phone call I received from Benjamin as I was driving home from work one day last week. I believe our conversation was "hey, you gotta hear this". When he held the phone up, to what I imagined to be an interesting scene, all I heard was one child screaming until he took a breath so the other would "outshine". Oh my! When I pulled in the driveway, I remember getting out of the car, taking a deep breath and diving into the role that meets me as soon as I walk in. (what happened to that transition time after work....or a nap?)
Benjamin has been playing the "stay at home dad" role as determined prior to completing the adoption. When we made this decision prior to the adoption, I know he was excited as I was fortunate in being able to take the first leave with Mikias. With my new job of working until 4:30, he certainly got more than originally bargained for. Although I know it must be difficult, Benjamin is doing amazing.
His "new normal"...Monday-home both boys. Tuesday- home with both boys & then PT/OT afternoon Wednesday- Mikias at daycare with the tumblesbus while every other week an ultrasound or CT Scan for Taye... leading up to surgery. Thursday- Mikias at daycare while Benjamin takes Taye to PT/OT followed by the ever relaxing Friday of being home with both boys. Last week was my first full week back at work and by Friday night we both were exhausted. But, hey....we are not complaining. We have a good thing going on over here with nightly walks (sometimes to the park) in which I can't think of any other place to be in the world.
Taye continues to keep us smiling. I have to admit that when people ask me how he is doing, I would love to say very confidently "good". I find myself so guarded and protective of him as I still feel like we walk on uncharted territory. His PT sessions go well. He is definitely gaining strength in his mid-section as we only need to allow him a "lean" for sitting. This is an improvement. He more comfortably rolls over on both sides (including the "skull-less" side). OT has been more difficult as he falls asleep often and struggles a bit with attending to things. We are in process of identifying if he may have a "sensory processing disorder".
His daily routine is improving as we are actually able to get him down for a nap and his night sleep has longer intervals. He certainly continues to eat like a champ. His latest endeavor was sweet potatoes! We take all of this as a sign that he is attaching to us and starting to feel more comfortable.
Last week his ultrasound indicated that the fluid found on his brain noted in the last CT scan is still there, but not growing. It looks like we are still on track to have his surgery June 15th. I would say my favorite growth seen thus far, is that he appears to recognize his name "Taye". It kind of feels like he is healing and growing into this new name. Certainly, Sintayehu (his middle name) will always hold a place for us, but Taye certainly has a nice ring to it...especially when he looks over and smiles.
Lately, we have been setting up follow-up appointments with various entities. We have a follow up appt later in the summer for his eyes, a neurology appt early June to determine a plan for the current seizure medication he is on, and this Wednesday is the evaluation for "early on" services offered through the school district. For the latter, he will have a whole team of early-on educators to determine what, if any, services to provide to ensure the earliest intervention possible in preparation for school. Honestly, the idea of an IEP for my 8 month old scares me, but the fact that this is even possible is extraordinary. At very least, we will have very complete record of his progression. Honestly, I think he deserves all this attention. He is making up for his first 6 months. Besides the fact, he is super cute and you just want to love on him all the time.
We also have a date set for our "welcome home" visit from the adoption agency. I almost forgot we had something to do to officially complete our adoption. I am pretty sure this was already to have taken place, but our agency has been great with giving us space. The US Gov't...well, not so great as his green card arrived with his name spelled SintayeMu.
Overall, Taye, aka... Sintayehu , SintayeMu or our little miracle still reminds us daily how much we have to be thankful for. That feeling is still so fresh...