Monday, May 18, 2009

Our new normal...for the time being

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...

Tuesday, May 12, 2009

When life gives you an uneven haircut...

...make a mohawk!!

Actually, the saying has something to do with lemons & lemonade...but it's the same idea. We've been thinking about doing this since Taye's surgery and we finally did it. There was no way we were going to completely lose the long curls since they were one of our favorite features. Since he'll get shaved on the one side again for his surgery in June, we thought Taye should try a mohawk for a while.

Sunday, May 10, 2009

Mother's Day

Happy Mother's Day Joanna! I couldn't ask for a better mommy to our two little boys. I know this has been a trying month, but you continue to do a fantastic job raising our sons.

Wednesday, May 6, 2009

Thank you

There are a zillion of people we want to thank for helping us through the last few weeks. All the people that have made their way into our lives have helped tremendously.

So, thank you to:
  • Our parents who have been by our side every step of the way...they were with us every frightening moment in the hospital and have helped every single day since. They spent nights in the hospital with us, allowed us to take breaks, and have been unbelievably supportive at every turn.

  • Our siblings and their families. Especially Caroline (for helping w/ Mikias and opening her house to everyone), Peter (for driving from Grand Rapids and spending a night in the hospital), Stephen (for driving in from NC, his copious note-taking, overnight hospital stays and fantastic babysitting skills) and Alison (for flying in from TX to spend time with us in the hospital)

  • The amazing staff at Troy Beaumont emergency room. Once the problem was identified, the entire ER seemed to spring into action to help with Taye. The coordination it took to start working on Taye, set up the helicopter transport, and coordinate w/ the surgeons was amazing.

  • Dr. Zakalik, the neurosurgeon at Royal Oak Beaumont. His expertise and experience was much needed and led to an extremely successful surgery. All of his comments and reassurances since have also eased our minds.

  • Every single doctor and nurse in the pediatric ICU. In previous experience w/ hospitals, I've never come across a group so dedicated, skilled, and compassionate as these people are. Everyone could be relied on at any time and they always made us feel informed and comfortable in the week we spent there.

  • The boys' pediatrician, Dr. Sampath. She came to the hospital immediately following the surgery and called us every single day we were in the hospital. She was in constant contact with the doctors at Beaumont and was able to re-explain some things to us.

  • All the specialists that have played a role in Taye's treatment and recovery so far - ophthalmologists, neurologists, physical & occupational therapists. We are impressed with everyone we encounter and their ability to evaluate and apply treatment to an infant.

  • Every visitor we had in the hospital...from long-time friends to people we've never met. Any distraction we could get from constantly staring at ventilators and monitors was very helpful.

  • Those that brought us food. Several people brought us food in the hospital (I mean you can only survive on the cafeteria for so long). Since we've been home, several neighbors have also brought meals to us.

  • Robin (Mikias' daycare) for helping to keep Mikias' schedule as normal as possible through all of this. It helped Joanna and I to know that Mikias was in a familiar environment playing with his friends as usual.

  • Everyone else that helped watch Mikias, pick up Mikias, feed Mikias, bring Mikias to the hospital, and stay the night at our house with Mikias. Again, knowing he was in good hands took a load off our minds.

  • People that sent us cards, emails, voicemails, text messages, and posted messages on this blog. Just knowing the number of people that supported us and were thinking of us helped a ton. We actually kept our computer on in the hospital room and would constantly read all the new messages.

  • All that prayed for us and added Taye's name to prayer lists. I get the impression that Taye was prayed for in various places all over the country...that's powerful stuff.

  • Everyone that hasn't met Taye (yet) but have still included him and our family in their thoughts. It's amazing to us how automatically this little boy from across the world was welcomed to our family.

There's probably some person or group I'm accidentally forgetting, but please know that our family so deeply appreciates all that everyone has done for us.

Sunday, May 3, 2009

A week at a time

We have decided that if we take each week at a time, it is easier to digest than looking much further than that. A "week" is certainly a graduation from the original "minute by minute", "hour by hour" and "day by day" basis from the accident. Additionally, much of our conversations still surround the "wait and see" approach, which certainly can't happen on an hour by hour basis.

Anyhow, this past week was full of specialist type appointments and arrangements. We have started to call this phase two of the recovery and healing process. We learned a lot this week and have been in the process of continuing to set up supplementary services and appointments.

Tuesday we met with a pediatric opthamologist who was fantastic. Although difficult to dialate eyes as dark as Taye's, the doctors were able to see enough to make some conclusions. First, both his eyes are working and seeing. The retinal hemorrhages we were concerned about before appear to be outside the center field of vision, which is a good thing. The only noticeable issue is the fact that Taye has lost a field of vision as he looks to the right. Essentially he doesn't have peripheral vision on his right side. The doctor did say we have to "wait and see" if this returns and then went on to tell us how the body tries to compensate for this. Very interesting.

Wednesday morning, Taye had a CT Scan and MRI. He had to be sedated for both of these, so we were back to not eating, trying to soothe without food and waiting room time. However, we did have an appointment with the Neurosurgeon later that afternoon and were able to see the results. The CT Scan of his brain shows the swelling has started to subside as noted by the clearer or more defined portion of the brain which has the damage. The neurosurgeon went over the picture with us and showed us which portion of the brain relates to the functioning within Taye's body. Again, very interesting. He did note that there was some fluid (not blood) on the brain, but indicated he wasn't concerned.

The MRI was ordered as a result of the skeletal survey within the hospital. Taye seems to have a missing or very small disk between his L4 and L5 vertebrae. We are looking into if this is congenital or if, by chance, he had spinal tuberculous or ----itis (can't remember the name).

Anyhow, the conversation with the neurosurgeon was very good. He did indicate to us that in his 20 some years of practice, he hasn't often seen a bleed as large as Taye's was with the result that we have. He said, "he's a lucky guy". I think we are more than lucky. As we were leaving, the office staff told us about the day of the accident through their eyes. Essentially, rather abruptly, both receptionists were on 2 phones, while our surgeon was also fielding calls and pages to coordinate the emergency surgery. At one point, they heard the helicopter over head to which our surgeon said "there's my baby". I am glad that Taye is his baby too!

Thursday we had both his initial and evaluative physical and occupational therapy appointments. We were very impressed with the pediatric facility and professionalism shown by the staff. We start PT and OT twice a week from here on out. I think Taye will benefit greatly from this! It is weird because there is starting to become a blend of where his "delayed skills" are coming from. Certainly, the effects of the accident are there, but we've also had many conversations about his environmental upbringing in the orphanage. Either way, we are in the right place for this.

Friday we spent the day setting up follow up appointments with Taye's neurologist, rehabilitation specialist and began the first steps to applying for the early on program for more PT/OT at the home. The biggest date nailed down is June 15th, which is the scheduled surgery date to replace the skeletal bone flap missing. It feels good to have a target date.

Overall, we have started to settle in to our "new normal". We had some big things happen around here this week as Mikias held Taye for the first time. He also was very helpful in giving Taye his pacifier and even assisted me in feeding him one day. I think he is catching on this big brother idea. Best of all, we have been able to go on walks outside and have recently not had anyone sleeping in Taye's room with him. We are all taking baby steps....just one week at a time.