Home at Last!

It's a regular morning here at our house.  As I sit here listening to the ordinary sounds of the kids playing, eating breakfast, chatting with each other, I am just so grateful.  The last week has been very difficult but it seems that, at least for the moment, things are returning to normal.

After I wrote my last post, a doctor came into the hospital room with ultrasound results.  He started talking and I realized that something was very wrong.  We expected the "all clear" and instead he was showing me paperwork for surgery.  Brad was out of the room and my mind raced trying to remember all the terms and abbreviations and explanations.  I prayed Brad would return in time to talk to the doctor, and a moment later he walked in the room.

The ultrasound had shown that the fluid in Matthew's hip was increasing and that he was experiencing something called AVN (Avascular Necrosis) which meant that the blood supply was not getting to his hip as it was supposed to.  This is a very serious problem that can quickly cause the death of bone tissue if not treated.  They believed that Matthew's hip was infected.  Within a couple of hours of talking with the doctor, Matthew was having emergency surgery.

It was difficult to wrap my head around what was happening.  I couldn't think.  I couldn't pray anything except "Oh please let him be okay."  I felt like a zombie.  It was the strangest experience and the most terrifying thing I have ever experienced.  

We were so thankful when the surgeon came to talk to us and said that everything had gone well.  Following the surgery, Matthew was in so much pain, and that was very difficult.  They were finally able to get it under control and we went back to his room for a couple more days.  We had one very difficult night with hours of pain and screaming that made me want to pull my hair out.  But thankfully the days were good and we started to see more and more smiles from our little guy.

When the physical therapist stopped by the day after surgery and wanted to get him up and moving, I must admit I thought she was a little crazy!  But she was so great with Matthew and encouraged him to sit up, then get out of bed, then walk to the window.  Seeing him on his feet again was amazing!  She got him a little walker and we went for a spin.  It was the best, saddest, greatest thing ever!

I hope and pray that we never have to experience anything like this with any of our kids again.  I thank God that Matthew is doing so well now and that everything is okay.  I am so grateful for the many, many people who prayed for Matthew, and for us.  God sustained us through a very dark time and I will not forget His mercies.  

We were very excited and thankful that Matthew did not have to have another surgery (there was a 50/50 chance he would need another one) and on Tuesday afternoon we rolled out of the hospital!

Coming home was such a relief!  Matthew is up and walking, back to himself, and doing really well.  Hannah and Nathan had a hard time with us being away, but did really well with my Mom, Dad and sister.  We are so glad they could come and stay with the kids so that we didn't have to worry about them.  It is so good to be all together again!

Matthew sees several doctors in the next couple of weeks, and Nathan has a couple of big appointments coming up as well.  We would appreciate your prayers for our family as we face these different challenges with our sweet kiddos!  

An Unexpected Hospital Visit

What a crazy few days it has been for our family.  Matthew woke up Friday with a ton of pain in his hip. I spoke with the doctor and she believed it was from the antibiotic he was on and that it may take a few days to go away.  I settled him on the couch and he did not move all day.

Around dinner time, his pain began to get worse.  As the minutes passed he became increasingly agitated and it was more and more painful for him.  Taking him to the bathroom made him scream and sob.  It was awful and we didn't know what to do.  I called the after hours line for our pediatrician and the nurse told us to take him to a children's hospital about 40 minutes away.  We loaded Matthew up, my sister came to watch the kids, and off we went.  I was so thankful that my mom and other sister were able to come and stay with Hannah and Nathan.  I didn't even have time to wonder if they would be ok, but I am so thankful that the kids seem to be handling this very well.

We did not know then that our trip to the ER would turn into a several day stay in the hospital for our little guy :(. When we arrived he was screaming and they labeled him a "Level 2" and told us that meant a doctor had to see him within 15 minutes.  I was so thankful for the quick and compassionate care.  He was in agony and could not stand to be touched.  It was heartbreaking to hear his cries.

We were in the ER overnight and they did many tests.  They did X-rays, bloodwork, an ultrasound, an EKG, more bloodwork...it was a long night with very little sleep.  Poor Brad got the hard chair.  He never complained though.

They were concerned that Matthew may have an infection in his hip and were trying to decide if he needed surgery to take out the fluid and check for infection.  They consulted orthopedics and rheumatology and said they believed it was something called Acute Reactive Arthiritis, which can occur after a bacterial or viral infection.  But because his pain was so severe they were not able to rule out infection.  They decided to admit him, do an MRI, and start him on a morphine pump for the pain.

I kept thinking that this couldn't be happening.  When they moved him into his new bed he screamed so loud I had to step out of the room.  I could not hold back the tears and could not stand to see him in so much pain.  I have never felt so helpless.

After the MRI the doctors discussed with us what they thought was going on and the medications they will use to treat him.  They started him on steroids through his IV and continued to give him pain meds and anti-inflammatory drugs.  By the evening yesterday he had stopped crying (he cried and yelled most of the morning until his MRI) and was talking and able to play on the iPad a bit.  Thankfully we all got pretty good sleep and this morning he was in much better spirits.  I was so relieved to see him smile again.  

His hip continues to improve and we hope to be out of here today or tomorrow, depending on his pain levels and how he is able to move.  He just had an ultrasound to see if he has more fluid in his hip that needs to be drained.  We hope this does not happen and that he will be able to walk again soon.  

This has been a very frightening and difficult experience and has given me such a new insight into things I knew nothing about.  God has been very gracious and we are so thankful for His love for us and for Matthew.  We know He is in control and that we can trust Him no matter what.  I hope we never, ever have to go through something like this again.  I can't wait to be home and to have my boy better!

Good Stuff and The Rest

Since life is so quiet and slow-paced these days (HA!) we decided to add some more fun to the mix!  We have been talking for ages about adding another little dog to our family as a buddy for our basset hound, Daisy.  Last Saturday we went to pick up a wagon we were buying for the kids from someone on craigs list and she had 5 foster dogs.  We didn't bring one of those home but it did start us talking about it again.  When we got home, I checked our local animal shelter's website.  I saw this little guy... 

...and the rest is history!  Brad was able to bring him home on Wednesday and I was surprised and a little nervous to find out this little guy is only 12 weeks old.  He is a Daschund mix and thankfully he is a most awesome little puppy!  He's only been here a couple of days but we already love him.  He's a perfect fit in our family.  

Today he was a little more "puppylike" and we saw him be a little more feisty, but he is still so good.  He plays hard, doesn't bark except when he's playing, comes the first time we whistle, and only had one small accident today in the house.  Daisy is still warming up to the idea but I really think she'll come around.  They were playing and chasing each other around the yard and it was good to see Daisy get a bit more exercise!  This little guy was keeping up pretty well :)

We have named our little guy Jack and he is a big hit with the kids.  He did nip at Hannah's leg today which ticked her off pretty good.  But other than that, they all love him!  He is very sweet.

And then there's the rest of yesterday's news.  Matthew...oh, Matthew.  This poor boy is having a rough time.  He has had strep throat for almost a month and was on his second antibiotic.  Yesterday around lunchtime he started complaining that his left arm hurt.  As the afternoon went on, he complained and cried more and more and stopped using it.  When I tried to adjust him on the couch and he started screaming and sobbing, I knew I needed to take him to the doctor.  A doctor's visit and many x-rays later, we still didn't know what was going on.  The doctor assumed it was a sprain, even though we had no knowledge of anything happening to his arm.

Today Matthew woke up moving his arm a little more and not in so much pain.  But within minutes of waking up he started to say that his other arm hurt.  I kind of wrote it off as little kid making it up, but as the day went on again he kept talking about it.  Then he added in his feet.  Then he stopped walking and started crying every time he tried to stand up.  I didn't know what to do to be honest.  I wondered if he was making it up but soon realized he really was in pain.  I called the doc, took him back in, and after examining him she decided it is probably the antibiotic he's on.  We are hopeful that by tomorrow he will be feeling better.  He has started on a different antibiotic for the strep and we really pray our little guy will be feeling better soon.  It has been a hard, tiring, scary week and I am so ready to be done with all these health challenges!  I am thankful for the sunshine and the chance to be outside so much, it really cheers me up even on difficult days :)

Sunny Days

I know, I know, it's been ages since I last posted!  Is anyone still out there?  Oh, hi Mom!  Life has been slow, and busy, and full, and beautiful, and crazy, and calm.  The days drift by and I think to myself, "Tomorrow, maybe tomorrow I'll post something."  But I've been stuck and distracted by so many things in life.  I think that maybe I'm back now.

My little Nathan.  He's got my heart.  He's also been the cause of a lot of concern these last few weeks.  A visit to the geneticist several weeks ago brought a new diagnosis for our little guy.  Last summer when he saw his eye doctor, we were told that he has something called Duane's Syndrome.  He is missing a muscle at the side of his right eye, but it turns out it's not that big of a deal and hopefully will not cause him any problems.  Along with Duane's Syndrome, the doctor told us that he believed Nathan has Goldenhar's Syndrome.  This syndrome causes genetic abnormalities of the eye, ear and spine.  We already knew about the eye and ear abnormalities, and at the genetics appointment, after it was confirmed that he does have Goldenhar's, we learned that he may have something going on with his spine as well.  We are waiting to see a neurosurgeon to get their thoughts about if he needs an MRI of his spine (the geneticist says yes but a radiologist was concerned about putting him under anesthesia when there is only a mild suspicion of something from his spine x-ray).  So we'll see what will happen with that.  Honestly, the further out that we get from this diagnosis the less upsetting it is for me.  At first I was very worried, not knowing what he was going to face.  Now we still need to learn more about his spine but it is not a pressing, everyday worry for me.  We will take things as they come with our wonderful little man :)  

More concerning for us recently is an infection that has caused one of Nathan's tonsils to be very enlarged.  He had strep throat (we all did, that was super fun) and is on his second round of antibiotics.  He stopped eating and was sooooooo crabby.  We saw the pediatrician, who told us as soon as she saw his tonsil that he needed to see the ENT.  We saw the ENT, who told us it is most likely an infection but that one tonsil can be a sign of something more, such as cancer.  He did not seem to think it was, and told us to wait a month and that if it was still large he would take it out then.  This was reassuring to me as I really thought if he was worried about it he would have been more proactive.  Still, it's hard to hear the word "lymphoma" from a doctor about your child and not worry.  We are praying he can kick this infection so that he doesn't have to have his tonsils out.

This little chicky...she is such a joy!  But lately she has been such a little terror!  Oh, the meltdowns.  Over everything.  It has been exhausting.  I finally realized her trigger - not really listening to her.  If she comes to me for something, I can't put her off.  I can't say "Just a minute".  I have to stop what I'm doing, get down and look her in the eye and talk to her.  If I explain what I'm doing and when I'll be able to help her, most of the time she is okay.  Sometimes she still loses it, especially when she's tired, but for the most part she's a much more pleasant little girl these days!

Our biggest little guy has been sick, too.  For months he has had fluid in his ears and at an appointment with his ENT a few weeks ago it was determined that he should have another set of ear tubes and also that his adenoids had grown back.  Weird!  So he will be having those out (again) soon.  He is scheduled for surgery on Tuesday but he is still sick so I'll be taking him to the pediatrician tomorrow to see if he's still got strep throat or if he is well enough for surgery.  Never a dull moment!

The last week has been glorious as the weather is FINALLY warm!  We are spending many hours a day outside, going for walks, playing in the backyard, riding bikes in the driveway, going to the park...it is so great for the kids to be able to get their energy out at last!  They are falling into bed exhausted.  What a beautiful thing!  I find myself pretty exhausted by the end of the day, too, but I kind of like it that way.  Life is hard and busy but so satisfying.  I watch the kids playing and running around laughing together and I just smile at how lucky I am to be their mom.  I wouldn't trade my life for anything!

March

Life sure has been crazy lately!  It feels like we are rarely home these days and when we are there is just so much to do its hard to remember to sit down and blog.  March has been extra busy as we have had many doctors appointments for all of us - with the family doc, geneticist, gastroenterologist, ophthamologist, audiologist, ENT...we are making the rounds!  Combine that with speech therapy appointments and playgroups and I think I'll be glad when this month is over.

Little Miss is still doing very well with her new hearing aids.  She loves to wear them!  She is talking up a storm and just when I thought our house couldn't get any louder, Hannah has added her voice to the mix in a big way :)  She is such a character!

The other day, we were out at the store together.  As we stood in line at the checkout, an older couple smiled at Hannah and the gentleman bent down and said a very friendly hello to her.

Do you know what she did?

 

Yep, that.

Sigh.

There's a proud moment as a parent!

Thankfully they just smiled and thought it was funny.

Crazy kids!

We are so thankful to have some warmer days around...we are ready to say good-bye to this snow...

...and HELLO to spring!!!!

Here's to Hearing!

What a great week we have had!  Well, as I typed that I remembered all the tantrums and fighting and general difficult behavior from a couple of little people around here that have driven me to the brink of insanity!  But other than that...a great week!

We were thrilled to go to Hannah's audiology appointment on Thursday so that she could get her new bilateral BAHAs!  This means she now has two hearing aids on a black headband.  From the moment we put it on her head we could tell she loves it!

We went out to eat to celebrate (by the way, I just have to say that Red Robin is the most wonderful, allergy-friendly restaurant to eat at! We can't wait to go back!).  Hannah was so super happy the whole time and she talked non-stop through our meal :)

At one point when she wasn't looking at me I said, "Hannah!" in quite a low voice.  In a busy, loud restaurant, she heard me, turned right to look at me and said with a big smile, "What?!?"  It was an awesome moment!  Her hearing is so much better and she can locate where the sound is coming from now where before she would look around a lot to find where it came from.

Nathan got fitted for a new ear mold for one hearing aid as well and then there will hopefully not be any more audiology appointments for quite a while!  We are so thankful for our wonderful audiologist who has worked for so long to get Hannah her BAHAs.  What a great week for our girl and for us!