Wednesday, April 30, 2008

Heading Home

Just a quick update to let everyone know that we will be heading home tomorrow. Evan is doing well and the doctor feels that he will continue to heal well at home. He will be coming home on the wound vac machine and will need to have the dressing changed every three days until the incision site heals and is able to be closed again. I will update with more details once we are home, but I am exhausted and need to get some rest (well, as much rest as I can get at the hospital). A big thank you to all of you who have kept us in your thoughts and prayers! We appreciate each and every one of you so much!

Monday, April 28, 2008

And we're back. . .

. . .in the hospital again! We went in for Evan's cast change this morning and when they removed his left cast they found that one of the incisions had opened and some of the skin surrounding it had "leathered" and died. The wound had to be irrigated and the dead skin removed and he is undergoing "wound vac" therapy (there is a "sponge" covering the wound that is attached to a long tube, attached to a machine. . the sponge basically sucks the impurities out of the tissue and helps create healthy tissue so that the wound can heal properly). He is also being treated with IV antibiotics. He will probably be here for AT LEAST 2-3 days while he is on IV antibiotics. We could potentially go home with the wound vac equipment and have a home nurse come to the house each day, but I think his doctor is currently leaning towards keeping him here until he is done with the wound vac therapy (this would likely be a week or more). Once the wound vac is done he will have to have "wet dressings" applied and changed daily (this will likely be done at home by a home nurse). He currently has a short, orange cast (he wanted to look like Nemo this time around) on his right foot and a soft splint covered by an ace bandage on his left. I am very glad that we made the decision to do this cast change under anesthesia as the doctors were able to take care of everything very quickly and efficiently. I am hoping that we might be able to get out of here sooner rather than later. . . but we do kind of have a bad track record as far as that is concerned! While being admitted today caught me completely off guard, the complication did not come as a complete surprise. We knew it was a possibility before he even went into surgery, so we are rolling with the punches and are grateful that it was caught quickly and is being treated.

We should know a little more over the next few days and I will update as the information rolls in. Evan is doing fairly well. I think he is pretty frustrated that he is stuck in bed, hooked up to monitors and IV's, once again, but he is still cracking jokes and smiling so he is hanging in there! For the past week or so he has slowly regained his appetite and I was worried that he might regress again after this cast change, but he actually came out of anesthesia asking for pancakes and cookies (surprise) and has already polished off 5 pancakes, 4 cookies and a small box of cereal (and 5 cups of apple juice as well), so I don't think we will have to worry about his appetite waning this time around!

Stayed tuned. . .I will try my best to keep things updated.

Saturday, April 19, 2008

The BEAUTIFUL little girl to the right. . . .

. . .is Miss Emma Cornish. Emma (and her new little brother, Micah) were adopted from Ukraine by the Cornish family earlier this year, after what I would consider to be the ultimate roller-coaster ride of adoption (if you have time, please consider reading about their journey on their blog, as it is a wonderful testament of faith and miracles. . .be sure to break out the tissues). Emma was born with Down Syndrome accompanied by a very complicated heart condition (further complicated by pulmonary hypertension). Emma has been through more trials in her 5 years of life than many experience throughout the course of their entire lifetime. . . .but the Lord has been with her and has always carried her through. The fact that she is alive today and part of a wonderful, loving family is a miracle in itself. Upon her arrival home, she was tested and evaluated by several doctors regarding her heart condition. At this time, it is not known whether the condition will be operable. The Cornish family will be faced with many difficult decisions in the days, weeks and months ahead. Mike and Meredith Cornish are two of the strongest, most faithful people that I have ever known and they have handled every trial placed in their paths with such dignity, faith and grace, but I know that the days ahead will be difficult for them and for their entire family. Please pray for their family that they will have the strength, peace and faith to face the day, weeks, and months ahead. Please pray for the doctors responsible for her care that they will have the clarity of mind needed to help Miss Emma. And please pray for sweet Emma, that she will continue to grow stronger and that the miracles that the Lord has performed in her life will continue. She is such an amazing little girl and she has already touched so many lives. It is my prayer that she will continue to do so for a very, very long time!

Thursday, April 17, 2008

Some weeks are harder than others. . . .

While this week has most certainly not been a bad one, it has definitely been draining. . . .emotionally, physically and mentally.

The week started out on a positive note. Joshua slid into Evans spot for a physical therapy "checkup" on Monday and was successfully discharged from the program for the time being. He is doing exceptionally well and, at this point, there is very little that his therapist can do for him that he is not already doing for himself.

Unfortunately that triumph was a bit short-lived as all the kids proceeded to come down with a nasty cold. . . .which they so kindly passed along to me! Somehow Richard has managed to stay relatively healthy through it all, but it has been a regular snot-fest between the rest of us (I know, not a pretty picture).

On Monday afternoon I noticed that Evan was developing blisters on the tops of both of his feet right at the opening of his casts. The blister on the left foot was relatively small, but the blister on the right was literally the biggest blister I have ever laid eyes on. I called the nurses line at his orthopedists office and left a message, unsure of what I should do should the blister burst. She called me back on Tuesday morning and asked us to come in that afternoon so the doctor could examine him. I took him in and the doctor decided to split his casts a little more to relieve some of the pressure, but to leave the blister alone. The nurse let Evan pick out some fiberglass to cover his casts and he chose to go red. . .like Elmo, of course! We will be going back in on the 28th for a cast change. We decided that it would be best to take him back into surgery and do the cast change under anesthesia. While I would certainly prefer that he not have to go under anesthesia again, I feel like it will probably be best for him. The clubbing of his feet was severe and the doctors will likely have to do some stretching and manipulation on his still very tender feet and I can only imagine how painful that will be. On top of that, Evan just doesn't do well with the hospital scene in general and I am worried about the effect it might have on him psychologically if he is awake and alert for the procedure. While I do feel comfortable with the decision, it certainly wasn't an easy one to make.

Evan is recovering beautifully from his surgery. He is now off all pain medications and seems to be feeling much better. . . .good enough at least that he asks me several times a day if he can swing, slide or drive his cozy coupe car! His feet are still pretty swollen, so he spends most of the day with his feet propped up on a pillow, but occasionally I can't help but give in to his pleas. Today I let him "drive" his car for awhile. Usually he sits in his car and I push him around and we play "bumper cars" with the other kids. Obviously we did not do that today. Instead I just let him sit in the car while I ran inside to make the kids' lunch. A few minutes later I looked out the window and saw him using his mouth to lift up his arm (using his sleeve) so that he could move the steering wheel! Talk about a smart kid! I never cease to be amazed at the things he figures out!

Not everything has been sunshine and roses for Evan however. We are still really struggling to get him to eat. We had made such progress with him in this area prior to his surgery, but I feel like we have taken 10 steps backwards. He is drinking, but it has been next to impossible to get him to eat. I'm not at all worried that he is going to starve himself. When he is hungry he WILL eat, but sometimes he only eats a few bites of something once or twice a day and as a mother, it is stressful! He is also having a really hard time sleeping. Evan is not a back sleeper and unfortunately, being casted all the way up his thighs has forced him to become one. . .and he is NOT happy about it. He wakes up several times each night screaming that he is "stuck" and begging me to take his casts off. It absolutely breaks my heart and tears me up that I cannot do anything for him. It is emotionally draining to watch your child go through that. I am hoping that he will be able to move better once he is in the short casts so that he can get a better nights sleep.

On a bit of a brighter note, Jacob and Lukas have been working on potty training this week. . . and I am very happy to report that they are doing a FANTASTIC job! Sure, we have had some accidents here and there, but I have to say, I have been very impressed with both of them and I am actually glad that I waited until the boys were home and things had settled a bit to start working on potty training with them! I'm so proud of my big boys!

This week has been full of emotional ups and downs for me, but I have to say, amidst it all, my heart is full and I feel so blessed to be where I am right now! The Lord is truly smiling down on us and just knowing that makes the more difficult moments a little easier to bear!

Sunday, April 13, 2008


Just a quick post to let everyone know that we are home. Evan was discharged this morning and we were home and settled by lunch time. He is doing great! He is handling the pain much better today and we have been able to go for longer intervals between pain meds (which is great because they make him nauseous).

He is still running low grade fevers, but the surgeons feel that this is most likely due to a lack of deep breathing following surgery. As strange as it sounds, it is actually quite common after surgery for people to avoid taking the deep, cleansing breaths that help to expand the small air sacs within the lungs. After surgery (especially if you've had a breathing tube down your throat), taking a deep breath can often be painful. If you don't take these deep breaths however, the lungs never fully expand and this can often lead to infection/lung complications or increased temperatures. To be quite honest, it sounded a bit crazy to me at first, but after observing Evan breathe yesterday, I realized that this is likely the cause. We started doing some "incentive spirometry" (aka, deep breathing) with Evan yesterday and are continuing to work on it at home. Because he is 3 and, at times, very stubborn, we have had to get creative when it comes to getting him to take deep breaths. Right now we are having him blow bubbles and blow on party favors (you know, the annoying ones that extend and make noise when you blow into them). Hopefully we will see the fevers leave within the next day or two. If they don't we will have to take his casts off and inspect his wounds for possible infections and we really don't want to have to do that, so hopefully these "cleansing breaths" do him some good!

He is sleeping peacefully on a mattress in the living room at the moment (there is no way I am going to put him back in with the boys right now. . .they are just too rough and too curious). He is so happy to be home . I am already amazed at how quickly he is bouncing back from this surgery. We will go back to see the orthopedist sometime later this week to close his casts (they are currently split on the sides to allow for swelling) and the plan is to keep him in these long casts for 3-4 weeks. Here's hoping that everything goes according to plan for once!

Thank you again to all of you who have been keeping our family in your thoughts and prayers. We appreciate each and every one of you so much!

Saturday, April 12, 2008

We're still here!

Well, we started the day with hopes of being discharged, unfortunately, today is not going to be that day. Evan has been running fevers on and off since yesterday afternoon and his pain meds are making him a bit queasy, so his doctor has decided he wants us to stay one more night. If he does well tonight, we should be able to go home first thing tomorrow morning. He is starting to tolerate the pain a bit more and was able to get a lot more rest today. He still isn't eating much, but that does not surprise me at all. He is a picky eater to begin with and, when he is out of his element and needs to feel more in control of his surroundings, he tends to become a lot more selective about what he will and will not allow us to feed him. That in addition to the nausea caused by his pain meds and he just isn't up for food right now. I can imagine that, once he is home and his pain has lessened, he will resume his normal eating routine.

The rest of the family is doing well. My wonderful mother-in-law has been helping Richard hold down the fort at home for the past few days. We have been so fortunate to have her here to help us and really appreciate her willingness to take time out of her own busy life to help us with the kids so that I can be here at the hospital with Evan. The kids love spending time with Grandma DD so this has been a real treat for them. We really are blessed to have such a great support system. Knowing that the other kids are in such good and capable hands definitely makes situations such as these much less stressful.

So, as we settle down for another night in the hospital, we hope and pray that tomorrow morning will bring a happier, healthier Evan and our golden ticket home!

One of few smiles that escaped today. . resting with bear by his side!

Friday, April 11, 2008

Not quite home. . .

Unfortunately, Evan will not be going home today. While he is doing MUCH better than he was yesterday and even last night, he is still in a lot of pain and needs the morphine to take the edge off. He is much more awake and alert today and while he is definitely miserable, there have been several times when he has flashed that big, beautiful smile at me. What a trooper. I was a bit worried going into the surgery that he would not be able to tell me whenH he was in pain. I am relieved that that has not been the case. He has been very good about letting me know when his "boo boos" hurt and even if he feels sick and that has definitely helped us stay on top of the pain.

Smiling through the pain

His doctor ended up putting him in hard casts following the surgery and splitting them up the sides to allow for swelling. His left foot has done well, but the toes on his right foot were starting to feel a little cold and were not as pink as we would've liked them to be so they came in last night to split the casts a bit more. His feet are looking much better now that they have a little more room to breathe. The doctor told me after his surgery to expect to see some blood seeping through the casts. When Evan was first brought to his room yesterday afternoon, I could see some blood where the casts were split and a few spots on the right cast where blood appeared to be "seeping" (but as you can see in the pictures, they really looked nice and white on the outside). Now both of his casts look like they are soaked in blood. It is a bit disconcerting (although I have been reassured that it is absolutely normal) and I am so glad the doctor prepped me for it, otherwise I think I might have freaked a bit!

Misery (you can see the blood on his right cast)

He will be in his current casts for 3-4 weeks (we will come back next week to close the casts once the swelling starts to go down) and then he will likely move to short casts for another 3-4 weeks. I was actually a bit relieved to hear that they would not be changing his current casts for a few weeks, because I cannot imagine having to be re casted so soon following surgery. Just thinking about it makes my feet hurt.

Hopefully we will be able to get his pain under control and get him off of the morphine so that he can go home tomorrow. He is doing such a great job and I am so proud of him for being such a trooper! Although I know it will still be awhile, I am so excited for the day when these casts come off and we get to see his beautiful new feet! Even more, I cannot wait for the day when we get to see him UP on those beautiful feet!

Stay tuned. . . .

Thursday, April 10, 2008

Surgery Day Pictures

Ready for surgery


Sleeping off the anesthesia

Look at those beautiful, straight feet!

All Done

Houston, we have flat/straight feet! Evan came out of surgery at noon. His doctor said that the surgery went well and he is pleased with the results. He did say that it was a difficult surgery because of the severity of the clubbing and that we need to keep a close eye on circulation (his toes are nice and pink, but he is most concerned with the back of the foot and heel area). He mentioned that there is a possibility that we could lose some skin on the backs of his feet and that he might need a skin graft down the road, but right now, all we can do is monitor his feet, keep them elevated and wait.

Unfortunately, hospital policy does not permit you to go back to the recovery rooms and so I wasn't able to be there when Evan came out of his surgery as I had hoped. Instead I was given his room number and had to wait for him there. Richard came with lunch and was able to be there with me when Evan arrived in his room. He is miserable and obviously in a lot of pain, but he is finally sleeping soundly and hopefully he will feel a little better once he wakes up. He was just sobbing when they first brought him upstairs and it was absolutely heartbreaking. He kept calling out for his brothers and sister (Mommy and Daddy too) and saying, "Good job Evan. All done. All done." After we got him settled in he managed to open his eyes a bit (he is very swollen) and looked at me and said, "Boo, boo. Ouch" Again, it just broke my heart. He has since downed several cups of apple juice and water and is now sleeping "peacefully" as the morphine pumps through his body. The plan at this point is to keep an eye on the circulation in his feet and to manage his pain. If he is still feeling miserable in the morning, he will likely stay in the hospital for one more day before going home.

As hard as it has been to see my son go through this miserable and painful process, my heart also rejoices that we are one step closer to getting him up on his feet. . .something that never would've been possible for him in Ukraine. For the past few weeks he has been telling me that he wants to walk. . .he wants to be up on his feet and running around with his brothers and sisters. Although we still have a LONG way to go, the thought that he will someday be doing just that, brings tears to my eyes. We are on our way!

I am so proud of our sweet little man!

Thank you again for all of your thoughts, prayers, encouragement and support! We truly appreciate them!

The package has been delivered. . . .

We arrived at the h0spital at 5:30 am this morning. Evan was not very happy about being dragged out of bed before the sun was up, but after telling him his bear could come along he was a much more willing participant. He cried and wanted nothing to do with the nurses and kept telling everyone that he was done and that he wanted to put his jacket on and go home. It always breaks my heart to see him so distraught. We turned on one of his favorite shows which helped to calm him a little, but he still kept telling me he wanted to go home (and who could blame him). About 45 minutes before they took him to the OR they came in and gave him some tylenol and versed. Once the versed kicked in he was much "happier" (I've got some great pictures/video of him during "happy hour"that should come in handy during his teenage years). I was a bit nervous about how he would do when they took him up to the OR, but he let me lay him on the bed and the nurses wheeled him away without him so much as making a sound (ah, versed)! The surgery should last about 4 hours and then he will be staying overnight to monitor his pain and to make sure that there are no adverse effects from surgery or anesthesia.

I will continue to update as the day progresses. Thank you all for your thoughts and prayers. They are greatly appreciated!

Wednesday, April 9, 2008

Hand splints, wheelchairs and surgery. . .OH MY!

It has been a crazy week. . . and it is about to get even crazier! It is surgery week for Evan, so we have been trying to squeeze in as much as possible before he is laid up and in casts. Monday was GORGEOUS so the kids and I spent the day purchasing and replacing the swings on our swing set and enjoying the great outdoors! On Tuesday we FINALLY received Evan's hand splints. . .and he is actually really enjoying them (definitely didn't expect that). We are having a bit of a struggle keeping his left thumb (which is shorter and has a significant amount of webbing) strapped down, but otherwise, all is well on that front. My biggest concern with the hand splints is keeping the other kids from messing with them. I have a feeling I am going to have to be extremely vigilant when he has them on to make sure that they don't mysteriously disappear!

Evan modeling his hand splints . . . and a cute pink and purple hat that Maren so kindly placed on his head! He is an easy "dress up" target!

After we got home from OT yesterday, my friend Stacey and I took all of our kids to the zoo (that's 7 children 3.5 and under). It was another BEAUTIFUL day and I really wanted to take Evan before his surgery. I am so glad that we did as he absolutely LOVED it (as did all of the other kids)! He was so excited to see all of the animals (especially the indoor aquarium. . .as soon as we walked in he shouted, "NEMO!") and he loved riding on the carousel.

This morning I had to take Evan to see the wheelchair supplier so that he could be fitted for a rental wheelchair for use after his surgery. I debated on whether or not we would actually need or use it since I use the double stroller for most of our outings, but have decided that it will be nice to have it at home, church and when I am taking Evan to his various therapies and appointments over the next few months.

The rest of the day today was spent in preparation for the next few days. Meals are cooked and in the refrigerator, ready to be popped into the oven, the laundry is clean, the grocery shopping done, the hospital bag is packed, a babysitter is lined up for tomorrow (thank you Stacey!) , my wonderful mother-in-law will be flying in tomorrow night and is staying until Monday evening. . we are SO grateful for her help!

We have to be at the hospital at 5:30 am tomorrow morning for a 7:30 surgery, so we will be up and out the door before the sun comes up. The surgery is estimated to last approximately 4 hours (2 hours for each foot) and he will be staying in the hospital overnight. If all goes well, he should be able to come home sometime on Friday. He will be coming home in "soft casts" which will allow for the normal post-surgical swelling (I'm a little nervous about this as well, with 4 other curious, rowdy children at home) and then we will go back next week and check the incisions (to ensure that they are healing properly and that there is no infection) and get his hard casts. He will be in long casts (these extend all the way up his legs) for several weeks and will likely have 2-3 cast changes over the course of the next 8 weeks.

Although I know that Evan doesn't really understand what is going on, I can definitely tell that he has been able to sense that something is about to happen. He has been very sensitive this week and starts to cry whenever we talk about the surgery or his feet. I know the next few days are going to be difficult for him, but I have a feeling that he is going to come through this with flying colors and surprise us just like he has with everything else!

Pre-surgical feet

While we are definitely nervous about this surgery, we know that the Lord will be watching over all of us, especially Evan and the doctors performing his surgery, and that all will be well. If you could keep Evan, our family and his doctors in your prayers, we would greatly appreciate it.

I will be bringing a laptop with me to the hospital so be sure to check for updates over the next few days!

Friday, April 4, 2008

"Look Mommy! A chicken!"

Wednesday was a BEAUTIFUL day (although still a bit chilly) and after being stuck in the house for several days due to rain, I decided to take the kids to the park. We packed a picnic lunch, loaded into the car and headed to one of our favorite parks. I like this park for many reasons. 1) It has four toddler swings as opposed to the two that most of our local parks have. With 5 toddlers, this is a great feature (although I have noticed recently that Maren, Lukas and Jacob are getting a bit big for these swings), 2) It has different playground equipment for different ages and "skill levels," (although my kids insist on playing on the one with the tallest, curviest slides nonetheless) and 3) It has a duck pond. . . and who doesn't love a duck pond!

So we got to the park, played on the swings, went down the slides and played in the dirt (because what trip to the park is complete without covering yourself from head to toe in dirt) and then decided to take a walk around the pond before sitting down for lunch. As we headed towards the pond, several ducks and geese crossed the path in front of us. Evan got really excited when he saw them and started bouncing up and down in the stroller. Then, in his most excited voice he exclaimed, "Look Mommy! A chicken!" I couldn't help but laugh! Although I did inform him that the "chicken" was in fact, a duck, I couldn't help but be impressed that, a child who, only 3 months ago spoke and understood no English whatsoever, actually knew the word chicken and associated it with a bird. He has since informed me that penguins and flamingos are "chickens" as well! And people wonder why I always have a smile on my face! Such a funny guy!

Thursday, April 3, 2008

House of Pancakes

We eat a lot of pancakes. It is one of the few things that Evan will consistently eat and everyone else loves them as well, so pancakes appear on the menu quite often. I have quite the pancake repertoire and what I love the most about pancakes is the ability to "hide" other ingredients in the batter to make sure that my kids (particularly Evan) are getting the nutrients they need in their daily diets (if you have a picky eater and you've never read "The Sneaky Chef" or "Deceptively Delicious" I highly recommend them).

That being said, I am constantly amazed at how many pancakes 5 toddlers can go through in one sitting. This morning, the tally was as follows:

Maren: 2
Lukas: 3
Jacob: 3
Joshua: 3
Evan: 6 (yes, SIX)

That is 17 pancakes between 5 toddlers! Holy pancakes batman! I can only imagine how many we will go through when they are teenagers!

Pancake aftermath (who doesn't love a pancake with chocolate chips. . .just in case you are wondering, those are not my secret, nutritious ingredient)

Ecstatic about pancakes

Wednesday, April 2, 2008

The many faces of Joshua. . .

I managed to snap the above photos within about 2 minutes. Joshua is the king of facial expressions and is such a ham. My favorite facial expression of the moment is his pout. He's got the sad puppy dog face down to an art (he perfected it during his hospital stay). He has quickly learned what a powerful tool of manipulation it is (seriously, who can resist an adorable baby with a pout), so we have seen this face quite often lately.

Apparently during our lunchtime "photo shoot" he grew tired of having the camera in his face and decided to close his eyes. For a minute I thought he might have fallen asleep, but when I called his name he broke into a huge grin (although he kept his eyes closed). I quickly switched the camera onto the video setting and managed to get a video of him "playing dead" over lunch. . .unfortunately I cannot get it to upload (maybe I will try again later)! Such a funny kid! He certainly keeps us all entertained.