Wednesday, March 26, 2008

Down but not out. . .

Joshua has proven over the past month that nothing can get him down. Although he has been sick and consequently miserable, he still manages to charm us all with his beautiful smile and his charismatic personality. A few days ago the kids were all in the playroom when I heard them all start laughing. I came into the room to find Joshua entertaining them all with his infamous "noises" as demonstrated in the following video (you will notice also, that poor Evan has become one of Joshua's favorite "toys"):


video

Such a goofy kid! Be sure to keep scrolling as I have posted several blog entries this evening. There will be more to come, so stay tuned!

TV Time

I am ashamed to admit that, in the past few months, my kids have probably watched more television/movies than they have in the course of their entire lives. While I am certainly not proud of plopping my children in front of the TV so much, it has had its benefits. For example, Evan has learned the alphabet and how to count to 15 from watching Sesame Street. And I would've never been able to snap the following, ADORABLE, pictures if Joshua was not hopelessly addicted to Curious George. . .


All About Evan


Lest anyone think we have forgotten about Evan, this blog entry will be entirely devoted to him and all of the wonderful progress he is making as the newest member of our family!

Evan is such a bright spot in our lives! His 1000-watt smile just grabs you and reels you! He is adjusting so well to his new life that, at times, it is hard to believe that he hasn't always been here. While he is very happy to have a new mama and papa, he is even happier about having siblings! After spending 3.5 years lying in a crib, listening to all of the other kids play in the next room and likely wishing he could be there too, he is finally able to be right in the middle of all of the action and he absolutely loves it! Although he is not able to physically do everything that Maren, Lukas and Jacob are doing, he is happy and content as long as he is with them, even if all he is doing is observing. Up to this point, Evan and Joshua have shared a bedroom and he has seemed content with that. However, a few days after coming home from the hospital with Joshua, he started asking me what Lukas and Jacob were doing as I put him to bed (he can hear them talking and laughing through the walls). It was obvious to me that he wanted to be in there with the boys, so last night Richard bunked the boys beds and we moved Evan in with Jacob and Lukas. They boys were so excited to welcome Evan into "the club" and I am happy that he is able to be in there with them rather than having to listen to them through the walls. . . he has had to do that enough in his life already.

I am a very firm believer in integration and I try my hardest every day to integrate Evan into all of the activities that the other kids are doing (bathing with them, sitting at the table to eat, playing with toys or in the backyard, coloring, reading, etc.). Because he still relies 100% on me for his mobility, that can be tiring, but having witnessed the progress that comes from being able to be a part of the group, it is worth every minute of my time and every ounce of my strength! It is just amazing to see how he has flourished over the past few months!


The day we took Evan from the orphanage, one of his caretakers said to us, "He has a beautiful mind and is very smart, his body just doesn't work." Over the past few months I have witnessed for myself what a beautiful mind he has. While I believe that all of my children are smart, I can honestly say that Evan is one of the smartest kids I have ever met. He has been home for three months and already speaks amazing English. His expressive and comprehensive language are impressive. While it is, at times, still difficult to understand him (especially when he is excited), it is just amazing how much he has learned in such a short time. Not only is he smart, he is also very determined (and very stubborn). I really feel like there will be nothing he cannot accomplish if he puts his mind to it.

Smart, determined, stubborn, funny and also very loving and caring. He hates to see others hurt or upset and is always the first to tell you it will be okay if you are having a tough time. He loves to gives hugs and kisses too! Needless to say, I enjoy taking advantage of huggy, kissy, snuggly nature!!

Not all has been peaches and cream. We have had our struggles over the past few months. Our biggest struggles have been with input (eating) and output (constipation), but we are slowly working our way through those issues. In the orphanage, Evan got most of his nutrition from pureed, watered down food fed to him in a bottle with a large hole in the nipple. He also ate a lot of bread and cookies. Consequently, he hasn't been very open to trying a lot of new foods up to this point. Bread, bagels, muffins, pancakes, rolls, biscuits, dry cereal, pbj sandwiches, pretzels, cookies and baby food (generally only fruit) are among the only things he will eat. He is finally starting to eat off of a fork which is fantastic and occasionally he will broaden his spectrum of what he will allow in his mouth, so we feel like we are slowly making progress.

Medically speaking things are coming along quite nicely as well. We are well into physical and occupational therapy now. We just finished fitting him for his hands splints which he will officially start wearing next Tuesday. He is sitting for longer periods of time and is even able to kneel (when placed in the kneeling position) while leaning against something (usually the couch). He will be having surgery on April 10th to correct his clubbed feet. He will be in casts for several months following his surgery and then he will have surgery to help with the contractures in his knees. Hopefully he will be able to start working on bearing weight in his legs by the end of the year.

All-in-all, Evan is doing exceptionally well and we absolutely love having him as part of our family! We are incredibly blessed!

Sunday, March 23, 2008

Quick update on Joshua

Well, it is already 10 pm and I have got to be up with the sun to take Evan to physical therapy in the morning, so unfortunately, I will not be able to publish my backlog of blogs this evening, but I did want to pop in quickly and give everyone an update on Joshua.

I wish I could report that all is well and that he is happy and healthy once again, but unfortunately, that is not the case. As Richard posted, we were released from the hospital around noon on March 11th. By late afternoon he had spiked a fever again. I took him to see his pediatrician first thing the next morning and we rehashed the entire saga from the very beginning. We poured over his chart, looked at every test result multiple times and talked about all of the different possibilities. We left the office with orders for more blood work and to call the doctor if his fever spiked over 101. By that evening he had been fever-free for 24 hours. He continued to be fever-free for almost a week. . .when suddenly he began spiking fevers again on Monday afternoon. That same day we received the results from the blood work that had been done the previous week. The results showed that his t-cell count (the white cells that make up your immune system) was still low (we ran the same test in the hospital). While they had increased slightly from his numbers in the hospital, they were still low enough that our pediatrician decided that we should have an official consult with the Infectious Disease doctor that we had worked with at the hospital (currently scheduled for April 1st). What exactly does having a low t-cell count mean? Well, unfortunately, all it really tells us is that his immune system is compromised and that something is, in fact, going on.

His fevers continued on Tuesday and Wednesday and, after speaking with the nurse who then spoke with the doctor, we were told to call if the fevers continued into Thursday. Of course, he woke up with a fever on Thursday, so we received orders to get more blood drawn and have an xray of the sinuses done. Late Thursday afternoon we received a call from the nurse that his xray showed that he did, in fact, have a mild sinus infection and so they immediately called in a prescription of antibiotics which we were to start that night, with orders to call them if, after 4 days, he was still having fevers. Well, we are on day 4 of the antibiotics and, unfortunately, his fevers seem to be heading up (103.6 at bedtime this evening) rather than out, so it looks like we will be making that phone call in the morning.

We have already done xrays, ultrasounds, blood tests, viral panels, respiratory panels, urine tests, CT scans and bone scans which all yielded very little information on what could be causing these persistent fevers, so our next step will likely be looking at his heart (one of the few places we have yet to look) and possibly doing a spinal tap (although the doctors seem pretty certain that this is not meningitis, viral or bacterial).

To say that this has been a bit unnerving would be putting it lightly. When this all began almost a month ago, he had RSV and a urinary tract infection and the fevers made sense. But those things went away and the fevers persisted with no explanation. When test after test yielded no answers and the doctors even started to become frustrated, it became a bit overwhelming and scary. When it seemed like his fevers might take their leave as mysteriously as they came, I was more than happy to send them on their way without further explanation. Had I known that they would simply be taking a brief vacation, I might have asked them to stay so that we could get to the bottom of this a bit quicker!

Underneath all of the unknowns, there is one thing that I do know and that is that Josh will be okay. We will all be okay. I have spent a lot of time on my knees praying for answers, praying for peace, praying for the doctors that are presiding over his care, and the spirit has most certainly witnessed to me that all will be well. Will he be miraculously healed? Maybe not. Will it take time to find answers? Most likely. But I have faith that all will be well in the Lord's time and that the answers and the healing will come. We have been blessed with an excellent team of doctors who are very skilled and very proactive and I know that, eventually, we will get to the bottom of this.

We appreciate the thoughts and prayers of all of our family and friends during this difficult time and hope that you all know that those thoughts and prayers are what lift us up and keep us going! Please continue to pray for our sweet boy and for the doctors who are working hard to find out what is causing his illness. We have witnessed many miracles in our lives as the result of prayer and know without a doubt that the Lord hears each and every one!

Happy Easter!

First and foremost, my apologies for the prolonged silence. I know that many of you have been waiting patiently for an update and I promise that it will be coming soon. To say that the past few weeks have been a bit chaotic would be an understatement, however, I have been working on several blog updates and hope to find a few minutes to sit down and finish them all this evening.

In the meantime, I know two, very cute little bunnies who would like to wish everyone a Happy Easter!


Unfortunately, my three other little bunnies hopped away before I could snap their picture! Stay tuned. . . there is much more to come!

Tuesday, March 11, 2008

Discharged.

From Richard:

They just got discharged and they're headed home. Send Val lots of email so she spends the next seven days digging out.

Could This Be The End?

From Richard:

Josh's temperature has remained stable since late Sunday, so they've said that if it does not spike again by this afternoon they're going to send him home.

Stay tuned...

R-

Monday, March 10, 2008

Josh Update - Monday

From Richard:

Well - today went well I guess? The blood results came back with some elevated levels which means... there's something going on. But nothing to tell us what.

Josh had his CT scan and his bone scan today to look for any freakishly weird things. He was sedated for that and thus spent 3/4 of the day sleeping, and when he was awake he was too drugged to sit up.

No real news for tonight folks, sorry to disappoint. Oh - except the kids and I are alive and well. Yipee! Gotta go clean.

R-

Sunday, March 9, 2008

BLIZZARD!!!

Blogger decided to do pictures today, so here are some of them from the Blizzard of 2008.

Jacob, Lukas and Maren all prepped for snow time.


Kicking the snow around.

Using the lawnmower to "snowblow" the walk.

Even in the snow, they still want to ride bikes!

Weeeeeeeeeeee!

My mom walking Evan in the stroller, Maren making her rounds.

This is the edge of a cornfield near the house. I liked the way the drifts looked.

And my trusty Jeep, which provided diapers, food, and visits to see Val and Josh

Saturday, March 8, 2008

Josh Update - Saturday (One Week Mark)

From Richard:

Josh was doing better on Friday, but not today. He's started to have cold symptoms again, and his fever once again spiked to nearly 106 deg.

At this point the assumption is that he won't be coming home anytime soon. This is mainly disappointing because the doctors still don't have any ideas as to what is going on. The plans for today included a CT scan, virus panel tests, and possibly a bone scan... Oh Joy!

Val has been staying at the hospital, but I delivered a laptop to her before I headed home prior to the storm hitting yesterday afternoon, so now she can surf the web and do email. For those interested, Josh is at Children's Hospital of Dayton.

Here at home the kids are doing pretty good. Having my mom come visit has been fun for them and relaxing for me. It's given me some opportunities to "deflate" and also allowed me to spend a little more time with Val and Josh.

But the best news is the WEATHER!!! We have already received a foot of snow, and boy do I love my snowblower! We got the kids bundled up this morning and they came outside and played for almost an hour while I used the snowblower. This afternoon I picked up Dave and we headed over to our old house to help dig out my tenant's car - which was buried in a snow drift almost 4 feet deep. The snowblower made quick work of that and then we went back to Dave's and cleared his driveway as well.

I had some pictures to add to this post but blogger was being crappy and wouldn't let me upload them. I'll have to add them later.

Thursday, March 6, 2008

Josh Update -- Thursday

From Richard:

Well - today was a step forward, but only in the sense that his fever has subsided a bit - I believe his highest temp up to this point today was 101. We're still awaiting the results of the most recent blood work, so there's still no indication of the root cause. If his fever continues to mellow out it's a good possibility he could come home sometime this weekend (but I'm not going to hold my breath.)

Fortunately many of our friends have been very helpful in a number of ways by babysitting, bring meals and more. Additionally, Val's brother Keenan helped out a lot by hanging out with the kids most mornings this week. My mom is headed here from Virginia tonight to spend the weekend and hang out with the kids, who have had a tough time with Val being gone. It's an 8 hour drive, but we appreciate her willingness to help out. It's easy to overlook the effect that this situation has on the kids here at home, so I focus on spending quiet moments with the kids when I can.

Surprisingly, the house is in great shape. Dishes are done and the laundry is all folded - I've developed a nice little routine that I follow each evening to keep on top of things.

As of this evening, the weather folks are calling for 6-8 inches of snow. But we'll have to see if that actually comes through.

Best wishes to all of our friends, and thank you for the positive comments.

Cheers-
R

Wednesday, March 5, 2008

Joshua Update - Wednesday

From Richard:

Sorry folks, still no good news. I just spoke to Val a few minutes ago and she said that Josh's fever had returned and his heart rate was over 200bpm (normal is 100-150).

This morning they re-did his chest x-ray and it was clear, they've also re-done his bloodwork but we have not yet received the results from it. From what we're told, the doctors don't have any good ideas of what's wrong. All of his systems seem to be functioning normally, yet his fever continues to be an issue.

At home, the rest of the kids are doing well with exception of Lukas who is having a terribly rough time with mom being gone and life being in flux. Lukas didn't do well with Val being gone for the adoptions either, so this is par for the course and I know pretty well how to help him (but there's no substitute for momma.)

Evan continues to get stronger and branch out into new activities. He's finally started to eat a greater variety of food - and I'm even able to get him to eat off a fork! Tonight he ate a complex meal of shepherd's pie and pear slices from a fork.

R-

Tuesday, March 4, 2008

We're still alive... but Josh is in the hospital.

From Richard:

Josh has been in the hospital since Saturday evening. He is being treated for complications of RSV - namely a "fever of unknown origin." The doctors are also a bit concerned about his "wheezing" which he has had ever since we brought him home (and to our knowledge he's always had it.)

Val is spending days and nights at the hospital with Joshua and I'm focusing on taking care of the kids and keeping the house in order. I'm working in the mornings while her brother watches the kids and then coming home while the kids nap and then I put them to bed.

Not a whole lot of progress has been made in determining what's going on with him, but we're hopefully they'll get it figured out. At this point I think we'll be lucky to have him home before the weekend comes around.

Val does not have much access to the internet, so anyone wishing to contact her should call her on her cell phone.