Grace’s “Fall” Fun

The past fall was pretty eventful for Grace.  We had been planning a big urology surgery for a year.  We made the decision last year to keep Grace in preschool another year because we were told she would probably miss a couple of weeks of school.  Ha! Those couple of weeks turned into almost 2 months.

 Last October, Grace came to me to say that her knee hurt.  I pass out tons of bandaids, so I didn’t think much of it.  I plopped her on the kitchen counter and finished making my breakfast.  I expected to see a scratch but when I pulled up her pant leg and couldn’t believe her giant knee cap.  Grace was still walking around so I figured it must be some type of swollen joint.  Shelby was waiting for us to pick her up at the airport, so we swung by there on our way to the urgent care.  However, thry immediately sent us packing to the ER.  

The doctors in the ER originally thought the same thing I did, because even her knee was gigantic she wasn’t really complaining of much pain at all.  The ER doctors consulted with the surgeon that usually sees Grace at the Spina Bifida clinic and he told them what they were actually seeing on the X-ray was indeed a broken knee cap that was being masked by  Grace’s limited feeling in her upper legs.  They told us she would need a full leg cast, I thought they were joking because at the same time I was having to yell at Grace to stop climbing up and down on the gurney.  I remember being a kid and wanting a cast, unfortunately my daughter did not share in this crazy notion -she was heart broken.  With tears streaming down her face, they put on her purple leg cast.  Thankfully, her big sister bedazzled the cast for her and that really cheered her up.  

Since Grace broke the knee on her better leg, she really wasn’t good at getting around.  We had several appointments that week to get ready for her upcoming surgery and a week of a bowel cleanout anyway - so we decided to keep her home.  Grace “just happened” to have an appointment with one of her orthopedic surgeons for her scoliosis two days after the cast was put on.  We weren’t even through the door, when the surgeon said we needed to talk.  He wanted to X-ray her knee again, so they sawed off the cast.  The results were suggesting she had also torn one of her knee tendons.  If this was the case, she was also going to need surgery on her knee if the tear was bad enough.  This began a flurry to get her scheduled for a MRI and they sent her home in a knee mobilizer.  

So amongst the bowel cleanout, trick or treat, pre-surgery testing, we also fit in a late afternoon MRI.  I will have to say Grace was really a rock star.  She didn’t complain once that she couldn’t eat the day of her MRI.  The MRI did show a tear, but thankfully everything was still aligned in her knee cap and nothing was loose floating around.  Her surgeon felt her knee would mend well on its own, but she would have to get the leg cast back on.  It was decided that the orthopedic team would be paged after her bladder surgery to come and put on the leg cast.

I had been really worried about how Grace was going to do at her upcoming surgery.  Having to be at the hospital most of the week before the surgery, really put her at ease for the actual surgery day.  She was so brave and even went back to the surgery room with one of the nurses.  After several hours, Jeff and I were allowed to go see her in recovery.  It was the saddest thing to see her with the tube coming out of her nose and the tubes coming out of her  abdomen.  Then she had to get that cast on, now my heart was completely broken to have her go through all of this.  

Getting Better

 

Matt has turned a corner, this second surgery really seemed to help. He is still has some swelling, particularly in the area next to his mouth where the biggest chunk was removed.   I don't know what this kid is going to do in a few months and he has so much room in his mouth.  Monday he is going to have the tape and drain removed, we will have a much better idea how things are healing.  Hopefully we should have the results of his biopsy.  The swelling should come completely out and the cheek should lie flatter in the next months. His facial muscles should get back to working better, too.   Incisions still make me queasy, and they are heartbreaking on my beautiful boy's face.  I have been more than relieved to have them covered this week.  His cough is doing much better and he has also been fever free. 

 

Matthew has somewhere picked up to call me mommy all of sudden?? It sounds a lot like his version of monkey (mut-me).  He and I went back and forth 30 times while I brought him every monkey in the house.  He kept getting madder when I obviously wasn't getting what he wanted and leaving the room to boot.  We finally asked "mommy??" - to which we got "YEEESSSSS". 

 

Matthew has become super attached to me these past weeks, rightfully so, but we will need to transition back through that in some time.  His new fascination is with watching drummers on Youtube.  We originally started watching Chinese drumming groups, but he has a definite preference for American marching bands.  He has gone through 2 toy drums in the past week and I think we finally have a half way decent one for him to jam on, some days I wish it would break ;) When he isn't drumming, he has been cutting up paper.  He awed the child development staff at the hospital as he cut up piles of paper while we waited for surgery.  They even came back and asked if he really was two years old.  Matt sometimes forgets the correct word for scissors and calls it a knife.  Nothing like having your two year old request a knife from his diaper bag in front of someone...

 

Thanks again for all the prayers, messages, love, cards, gifts and food that has been graciously given to us in the past two weeks.  We have been blessed beyond measure.  We have been through the highest of highs and the lowest of lows, but are coming out on the other side better for it all.  I have become very grateful for our hospital stay back in July, it certainly gave me a small taste of what to expect.  Otherwise, I think I would have been completely overwhelmed with so many new things thrown on us at once.  Most importantly, we are so grateful to all of you that have embraced Matt, how amazing to go from someone who had nothing, to someone who has it all. 

 

 

 

 

 

 



Out of surgery

Matt out of surgery around 2:00 pm.  Plastics report was that procedure was "more than perfect".  About 70% of the tumor was removed and there doesn't appear to be any damage to his smile, muscles or nerves.  At this point we are still waiting to go back and see him.  He still may need some minor cosmetic procedures in the future.  They think he should be able to come home tomorrow.  God is good.    

Off to surgery

Matt went back to anesthia around 7:45 am and the actual surgery started an hour later.  He was really smiley this morning and actually very peaceful.  He knew he was having his cheek worked on (as was his monkey curious George ).  He had his whole collection of monkeys with him and really enjoyed playing with some of the new  toys we packed (surgery has to have some perks!!)    We definitely feel covered in prayer.  As I woke up this morning to get ready and finished packing our bags for our stay - I was definitely reminded of 9 months ago.  We were packing our bags for china and up at the crack of dawn - excited and not so sure of what was going to be in store for us all.  Such a similar feeling today.  Praying for the best possible results, but having to trust God to care for all the details no matter what. 

 Its hard to think about the scarring that Matt will have and very hard that this is his to carry.  Last week we had some pictures taken of Matt.  As I looked at the proofs, I mentioned to the photographer that you couldn't even see his present scar in the picture.  I looked again, and yes it was visible.  But boy can that boy take some cute pictures!  After awhile, I think I  just forget it's there and just look past it. Hope that's the same for everyone else, too. Even though they are his scars are his to carry, they will be his to share, too.  I am praying it includes a story of great hope and grace.  A story of how God has been at work in his life from the time he was formed and brought him home across the ocean.  How God took what made him an orphan and used the very same thing to make him a treasured son.  

On the road to recovery

Matthew's drain is out and he is doing much better.  The drain was really crazy - it entered his head behind his ear and went under his skin across his cheek.   They cut the stitches holding it in place and pulled it put like a piece of spaghetti when they removed it.  EEeewwww! Sorry tmi.... His cheek is still a little swollen and bruised, but nothing can stop him for long.  All the doctors and nurses have commented how well he has been taking all the procedures.  At home,  we have now been faced with trying to get all the adhesive off of his body from having various monitors and wounds covered. That he doesn't take well! Two years olds love to sit still while you try to take off adhesive, pull off old gross bandaids and put new ones on, too.   How come bandaids never stay on when you want them too and never come off when you need them, too?

I had once thought (for about 5 seconds)I could have been a nurse.  Heck, isn't audiology sort of in the medical field??? Yeah right! Anyway,  I know for sure now that I could not have done it.  However I will do anything for my son and continue to do so, but drains and incisions are not my thing at all.  His incision is looking better and since we can now tape it back up - it's even a whole lot better for me.  

Looks like we have a tentative surgery scheduled for the big excision of the entire mass the second week in October.  He is scheduled for  a 5 hour spot at this point and we may be adding a laser surgery for the epidermal nevus on his belly to go with it.  I will be very grateful to have my sweet little guy done being poked, cut and prodded.  

More details filled in

We spent almost 9 hours at the hospital yesterday for Matt's biopsies - loonng day!  He waited so patiently when his surgery got delayed for three hours, playing and never asking for something to eat.  The incision on his cheek seems to be a couple of inches and his cheek is even a lot more swollen looking then usually is. His cheek is taped and will most likely have to be for next several weeks.  He doesn't seem to be in much pain, though.  He is fortunate to have all of this as plastic surgery. 

The results won't be back till next week, but have had more details filled in for us.  There are multiple small cysts involved in the mass that innervates  pretty much everything on that side of his face. The surgeon feels that there is only a 5% chance that it could be cancerous, but the biopsy will let us know for sure what kind of tissue it is.  We can proceed with the next surgery at any time.  The next surgery will be the big one and will take four plus hours.  Most likely the incision will start under the outer corner of his eye, go just along just the bottom of his eye and down the side of his nose and smile line.  Yes there will be scarring, but hopefully most of that will be camouflaged where naturally occurring lines already are.  There is a  risk for facial paralysis on the left side, but the surgeon says that if it does happen, it could be repaired with muscles from his temples when Matthew is older.  He would have to relearn to smile though.

Gulp.... lots to digest, but still  hope. 

Leaving on another jet plane...

It's 4 am in the morning and I just dropped Shelby off for her trip to Guatemala. A group from our church with several of our dear friends is headed to work in an orphanage for a week. So very excited and nervous for her at the same time. I know this trip will be life changing - you cannot leave an orphanage without seeing life a whole lot differently. But in order to wear those "Jesus glasses" as I like to call them, there is always a sacrifice- for her it is flying without her family way out of her comfort zone with no cell phone. (The no cell phone part is harder on me than it is on her!) She was so nervous the past day, but I am so impressed that she fought through and was determined to still go. I wish one us could have gone with her, but that just wasn't a possibility this year with all our travel and with a little guy at home who is still very sensitive to change.

It wasn't that long ago that Matthew was the recipient of visits from mission groups visiting him in China. Still amazing to think of even as we approach him being with us almost 6 months, he is such a different kid. Still such a sweet little boy though! I am so happy that his hair has finally grown in! Lots of new words popping up each day, too. During the day, he still doesn't like to be in a room without one of us there with him. But at night, Matthew is now sleeping in a "big boy" bed usually by himself. He hasn't figured out that he could get out on his own and calls for us to still get him out. Since he has finally mastered climbing up and down on chairs and the sofa, the bed shouldn't be too far behind. We were worried that he only used to whisper, no problem, he found his voice and loves for us (and anyone within 500 feet) to hear him. He went to VBS with us all week and spent time in the nursery with his buddy Kaden. Matthew actually did pretty well, thankfully a set of grandparents watched over the nursery and they were able to give the boys lots of attention. I of course peaked in the windows regularly.

Now that VBS is over, we have spent the last week visiting the McKinley Museum, the Cleveland Zoo and the MAPS (military and aviation museum). He loved the museums, but Matthew has no great fondness of mannequins that they use in their displays. The zoo ended up being crazy busy and hot, not a great combination for a cranky 2 year old who decided he didn't want to ride in the stroller anymore (started giving me flashbacks of our visit to Chinese Walmart). Thankfully, we all had enough and we headed home.

So I will be ball of nervous energy the rest of the week until my girl is back home. Hopefully I can channel that into some cleaning. We also have another visit to surgeon #2 for Matthew's cheek. His team feels that the cysts/tumors may be a lot more jumbled up in the muscles, nerves and bones than we previously thought. Regardless, he still looking at surgery sometime this year.

This was kind of like the Tea Cup ride

This is how the man usually sleeps

Love that his hair is finally coming in

1st 4th of July

At VBS, Matthew with cousin Leland and Robbie.  Matthew loved the crowns and he wore out three of them this week.

They all wore red white and blue on accident - Robbie is quickly overtaking Shelby in height

At the MAPS museum



In the Goodyear Blimp gondola

My good looking husband

This is what it would look like if I was packing my airplane for vacation - everything but the kitchen sink...

The "twins", probably the closest I will get to dressing them alike