Never Simple

About 4pm today I noticed Matthew's face was swollen.  Hmmm.  I called the pediatrician to see if (a) this helped put the pieces of the puzzle together or (b) this complicated the picture.  His call back indicated b. Matthew's symptoms do not fit together nicely and with this new symptom, it was time to go to the ER. 

I was in total agreement with the pediatrician.  The face swelling, the belly noise, the vomiting, the lethargy, the paleness, the pathetic cry/moan, the slight dehydration, the distended belly-- I was a bit scared for our baby Matthew.  And then as I packed the bag to go, Matthew tilted his head back to Darren and smiled.  It was the first smile we've seen in days.  Then Matthew started moving his arms and legs. It's the most active he's been in days. 

I think to myself "Alright, I guess we'll skip the ER for now".  Then Matthew proceeded to throw up.  But he did so with a smile. I'm not sure what that means but I know Matthew never makes it easy on us and that includes this decision.  So for now, we are going to wait on the ER.  Of course, if he worsens, we'll head to the ER.  But hopefully Matthew's new attitude means he's on the mend.  We hope and pray!

Tummy Update 2

The x-ray did not show any visible signs of a blockage, so Matthew's tummy issue is likely viral.  If he presents certain symptoms of concern, we'll take him to the ER otherwise we'll just keep on keeping on and pray it passes quickly!  Poor sweet baby Matthew!

Tummy Update

Well, thankfully Matthew was able to keep down the liquids last night (thanks to the meds).  Matthew is still lethargic, whining/crying, with audible stomach noises and a distended belly.  Like us, the pediatrician is hopeful this is a stomach bug and Matthew is just presenting with unusual symptoms, but the fear is that he has a blockage of some sort.  We had an x-ray done this morning and that should tell us one way or the other what the next steps are.  We pray this is just a bug! 

Stomach Bug

Not much has changed in the last 24 hours.  Matthew is continuing to throw up, though now it is the pedialyte so it is less disgusting than 24 hours ago. He ran a fever of 102* after tylenol this morning, but it is normal now. He's not comforted by being held. 

He's exhausted but falls asleep only to wake up crying minutes later.  He hasn't gotten a stretch of sleep longer than two hours since Friday. His stomach noises are audible and frequent. He's slightly dehydrated. He's lethargic. All in all, Matthew is just plainly miserable. 

Though we were 30th in the queue at the after-hours pediatrician, we got an appointment for today (given the fever and 36 hours of vomitting).  The on-call pediatrician initially suggested we go to TCH for x-rays and blood work to figure out what is going on, but then acquiesced that we could attempt to manage this at home with meds and a strict hydration schedule (1 tsp every 5-10 mins) and a follow up appointment for tomorrow morning with our pediatrician.  If Matthew throws up between now and tomorrow's appointment, Darren and Matthew will be heading to TCH ER.  We are praying we won't have to do that!! 

Unfortunately, Darren would have to take Matthew because I have a raging head cold.  It is never good for mom to go down, but right now is not good timing at all!  And Jackson keeps complaining that his tummy hurts, and if he starts throwing up, I fear that Darren may run away.  For all of our sakes, we are praying for health to return to the Hoy House very soon!! 

Yuck

We really need health to return to the Hoy House...soon!  In the last 2 weeks, Matthew caught a lung infection, then Jackson broke a bone in his foot, then Jackson caught a cold, then I caught a cold, and now Matthew has a stomach bug. 

So, the last 2 weeks haven't been fun, but I think today takes the cake so far.  Jackson and I are still battling our colds and Matthew was up 1/2 the night fussing.  Then this morning Matthew started throwing up, time and time again.  He hasn't been able to keep anything down since early this morning.  He cries out every time his stomach moves.  Poor baby Matthew! 

Helmet Countdown Wk 3

Helmet countdown-- 3 weeks down, 7 weeks to go.

Good news about the helmet:
1. The latest fitting seems to have helped.  The spot on the back of his head seems to be healing.  Matthew was out of the helmet for 10 hours on Monday, but has been back in it 23 hours/day since. 
2.  It doesn't stink like a teenage boys foot anymore.  It still smells bad, but it is not nearly as offensive. 
3.  Matthew has adjusted to it well.  Now when we take it off, he tries to figure out what is different (rolls his eyes up to look for it, turns his head back and forth to try to feel for it, etc). 
4.  The helmet was helpful when we were giving Matthew breathing treatments, as it helped trap the steam/medicine close to his face. 
5.  We really don't have any bad news about the helmet this week!

Matthew reaching out for Padme



Happy 11 Months!

I was just thinking today about a typical day 6 months ago-- Matthew taking medicine 7 times a day and taking a bottle 7 times a day, screaming and taking 30 minutes to an hour to eat.  Oh goodness, how thankful we are that we made it past that! 

We are so grateful to be where we are now, celebrating Matthew's 11th month.  Matthew is in a good place (despite fighting his current respiratory infection).  He's relatively healthy, eating well, happy and slowly progressing developmentally.  We have a lot to celebrate!  In addition to being a stones throw away from his first birthday, Matthew has recently hit a huge milestone.  He is finally sitting unsupported! 



Matthew 11 months (sitting unsupported)

We have been so fortunate to have the unwavering support of our family and friends through Matthew's journey this past 11 months.  Thank you for being there in good times and bad!  We are so glad to be sharing this good time and pray for many more! 

Jackson's Foot

Yesterday I received a call from our pediatrician who was checking up on Jackson.  When I explained that Jackson was still limping, though his fever was gone, he explained that there was a reason for that.  The official radiology report from Jackson's foot x-ray indicated that he has a break in his metatarsal bone leading up to his big toe. 

So, we went to see an orthopedist for Jackson today.  After an hour and a half wait with Jackson and Matthew, the doctor said it was a common break that would likely heal on its own.  Thankfully no cast or boot. 

Other health related news-- Matthew is still fighting his lung infection and I think I may be coming down with something.  Not fun! 

Development

Because Matthew is one of two known people in the world with his disorder and because his particular chromosome duplication is larger than any published accounts we've been able to find, we are flying blind.  Matthew is writing the book.

We know Matthew's not a typical child (hitting the developmental milestones like Alyssa and Jackson), and we don't know yet if he'll just be developmentally delayed or if he'll be developmentally disabled.  We don't have any good guess about what the future will hold for Matthew and his development.  Really, we have no idea what the next week holds, much less months and years from now.  We don't know if Matthew will ever be able to walk or talk.  We pray he will and we will do whatever we can to help him.   All we know about Matthew's abilities is what he can do now. 

And right now, we celebrate because Matthew is using his hands.  He is grabbing at toys, at his pacifier, at the telephone, etc.  Matthew is interacting with his world through touch.  Every developmental milestone Matthew hits is a huge reason to celebrate in our house as we don't ever know it will happen until it finally does.  We pray we have many more reasons to celebrate Matthew's development as the weeks, months, and years go by.

Hoy Boys Update

Thankfully Jackson's fever broke mid-day yesterday and his limp is improving.  As expected, it seems like the fever and the foot pain were just coincidental.  This morning Jackson seemed fine and we sent him off to preschool.  I'm hopeful that was the right decision and we don't get a call midday to come get a sick Jackson. 

Matthew doesn't seem to be wheezing anymore, but has a nasty cough.  He's been more alert and less fatigued, so hopefully this is the last step to wellness! 

Today we are going to see the orthopedist to adjust the helmet yet again.  That (supposedly bone) spot on the back of his head is still rubbing and is very irritated.  We left Matthew out of the helmet for a 24 hour period last week, but he was in it 23 hours a day otherwise.  Now this morning, he's out of it again until we see the orthopedist this afternoon.  I don't want him to further harm that area, but I also want to get the helmet back on.  Hopefully the orthopedist will be able to make the right adjustment today so we can get the helmet back on for the duration of the time Matthew needs to be in it. 

Matthew sans helmet

Our Poor Hoy Boys

I know to expect a little chaos with 3 kids, but I don't think I realized we'd be visiting the doctor multiple times a week with said 3 kids.  Goodness, soon we'll have our own dedicated wing at the doctor's office.

Thursday Jackson started complaining that his foot hurt.  I looked at it, didn't see anything and pretty much told him to walk it off.  Friday morning he woke up limping.  By Friday midday preschool called and said he was refusing to walk on his foot.  So, into the pediatrician's office.  It had been a whole 3 days since we saw him last!  After the exam (and ruling out strep- which can cause joint pain), we had x-rays done at almost 4p on a Friday.  I assumed there wasn't anything there, but we want to rule it out.  Then, in the middle of the night, Jackson spiked a fever. This morning, 10 minutes after I posted this originally, our pediatrician called.  For some reason, the x-ray wasn't read by radiology, but from his basic review he didn't see anything unusual.  The fever and the foot pain may be unrelated or it might be something more complicated.  If Jackson continues to run a fever, we'll take him back in to the doctor.  Until then, it is just wait and see.  Poor little Jackson!

While we were in the pediatrician's office, the doctor listened to Matthew, who is still wheezing and still has fluid in his lungs.  Matthew doesn't seem to be getting worse, but doesn't seem to be getting better.  The doctor indicated it may take a week for this to go away.  In the meantime, Matthew is very fatigued and sleeps a lot.  Poor baby Matthew! 

We are hopeful health will return to our little Hoy boys soon! 

Helmet Countdown Wk 2

Helmet countdown- 2 weeks down, 8 weeks to go (?)

In the past few weeks, two unusual spots have developed on Matthew's head.  One is near his suture line on the right side.  This spot feels 'ragged'.  The other spot is in the back middle and is a round protrusion.  These spots are rubbing in the helmet. 

We met with our orthopedist yesterday who thinks the first spot is the synthetic plate and the back spot is 'normal' bone.  He made adjustments to the helmet to account for these, but Matthew has been helmet free since 4pm yesterday to allow the rubbed spots to heal.  We had hoped that we'd be able to get the helmet back on this morning, but the spot in the back is still inflamed. 

We are still questioning that this spot in the back is 'normal' bone.  It has seemed to grow within the last week.  We will be watching it closely and will bring it to attention of Dr T at our appointment in 2 weeks. 

In a related note, I'm entirely frustrated with myself that I have turned into a paranoid pessimist when it comes to Matthew. That is just NOT my personality but it is now my reality.  I don't look at this spot and think "oh, he said it's normal bone, it must be normal bone." Instead I think to myself "This wasn't that big last week. Why did it grow? Could it be something more sinister? Is it okay that we wait 2 weeks to see Dr T?  What if it's something abnormal?"  Ugh!!  I'm tired of having things to worry about.  I don't want to manufacture more, but I don't want to miss a red flag either.  Double ugh!

The helmet good news for this week-  
1.  As our orthopedist has indicated would happen after week 1, Matthew seems to be regulating his temperature in the helmet better and sweating less. This means a less stinky helmet.  It still smells, but it is not knock you down offensive.
2.  The helmet is doing its job.  The proportions of Matthew's head (front to back vs side to side) are improving.     

I'm looking forward to getting the helmet back on, as I don't want to prolong his time in the helmet and I don't want him to have to adjust to it again. 

Health related update-- Matthew is still fighting his lung infection and still has quite the wheeze, though he's had periods of happy baby in the last day.  We are continuing the breathing treatments and he's got another day of steroids.  Hopefully he'll have this beat by the weekend. 

Thank you for the continued prayers for sweet baby Matthew!  They are felt and always appreciated! 



Matthew's first ride in the grocery cart like a big boy.
He pulled the cart cover in to the basket with him, time and time again!



Do-Over Type of Day

So, as we went to bed last night, I was hopeful Matthew's ailment would quickly go away without intervention.  After being awoken every hour through the night and Matthew waking up with a fever in addition to his cough and wheezing (though not labored breathing), we figured that this ailment wasn't going away on its own and it was time to take Matthew to the pediatrician. 

And the pediatrician says... yes, Matthew's lungs don't sound good.  We gave him a breathing treatment in the office and left with scripts for (1) breathing treatments at home every 4 hours for the next 2 days (2) steroids for the next 4 days (3) antibiotics for the next 10 days.  1 and 2 are to help his lungs and the 3rd is because he's considered 'medically fragile' and likely will have trouble fighting off anything else while he's recovering from this. 

When the doctor showed me how to use the nebulizer (for the breathing treatment), he commented 'Matthew is making sure you learn something new.'  Oh goodness, how true that is.  I now know a lot of things I never wanted to know because of Matthew!   I'll just add this to the list.

Then my day just got frustrating.  There is only 1 medicine for the breathing treatment that can be used with Matthew's heart condition.  Of course, that medicine is not covered by our insurance.  Then I came home to a HUGE bill from Texas Children's for occupational therapy that insurance should have covered, but didn't.  Then I called to cancel my COBRA insurance from last year, and after going through 5 minutes of menu options, I was told they were closed for the day and hung up on.  I was just DONE! 

But we got the huge bag of meds from the pharmacist and gave Matthew a dose of everything before putting him to bed.  Hopefully the meds will help Matthew recover quickly and thankfully tomorrow is a new day!

New Ailment

It only took about 12 hours after my post about Matthew's good appetite for it to take a nose dive.  Of course it has nothing to do with me posting, and it likely has a lot to do with whatever new ailment he is coming down with, but darn it! 

I'm not sure what Matthew's coming down with, but it has some of the same symptoms as is typical for him when he's sick (fussiness, lack of appetite, stuffy nose, cough) and a new symptom (wheezing).  Right now, we are willing to wait it out and see if he gets better on his own.  But if his symptoms get worse or he doesn't kick this soon, we'll go in to see our pediatrician.  It has been a whole week since we've seen him, he must miss us by now. 

Eating Update

I'm almost afraid to post this, as every time I've commented positively on Matthew's eating it has taken a nose dive, but I'm going to throw caution to the wind and share the good news.  Matthew is eating well these days! 

He still eats approximately 7 times a day, but it is mixed up-- bottles and baby food.  He loves baby food.   He likes sweet but not super sweet fruits and veggies the most. As well as eating baby food well, he is taking so much breastmilk/formula from a bottle that we've had to move to the larger bottles.  We are just amazed and surprised every time he finishes a big bottle!

Right now, I'd classify Matthew as a 'good eater'.  This is the first time I've ever been able to say that about him!  I hope this continues. Just thinking back at our battles with feeding and knowing his poor eating has usually indicated something bad (malrotated intestines and heart failure), Matthew's good eating is an amazing joy and gives us even more comfort that he is doing well! 

Helmet Countdown Wk 1

Helmet countdown-  1 week down, 9 weeks to go. 

The helmet good news= Matthew is continuing to adjust to the helmet and is getting a longer and longer stretch of sleep at night.  That is very good news!

The helmet bad news= It stinks, bad.  My sweet baby Matthew's head stinks like a teenage boy's foot.  I've cleaned the helmet and his head as they say we should, and it still smells really bad.  I guess sweating in it for 23 hours a day puts a stink in it you just can't get rid of.  Not good!

My little fighter pilot

Tube Tuesday

Matthew's luck must have turned.  The ear tube procedure today was quick and without incident.  He came out of anesthesia like a champ, took 4 oz of Pedialyte, and started smiling.  In and out of TCH in less than 3 hours!  No more ear pain! 

It was odd being in the same waiting/recovery rooms as we were in July for the malrotation surgery.  I was struck by how far we've come in these almost 6 months.  And now with the last 2 procedures going well and no nasty surprises in a few months, I'm more and more optimistic we are turning the corner.  Hopefully Matthew's luck has turned for good! 

Ophthamology Update

No news is good news in this instance.  They were not able to get Matthew to do anything unusual with his eyes during his ophthamology appointment. The doctor said that of the patients like Matthew (whose eyes seem fine during the appointment), about 80% outgrow the issue within 6 months. The other 20% worsen and often need surgery.  Time will tell. 

I spoke with Dr. T's assistant today to schedule our next follow up and I casually mentioned our appointment with the ophthamologist today.  She said that it isn't unheard of to have eye issues after the craniosnyostosis surgery and they usually refer patients to an ophthomologist if issues arise.  So, hopefully this issue is temporary and will resolve itself. 

Matthew was in the helmet 22 hours yesterday and will be in it 23 hour today onward.  He seems to be used to it during the day.  Matthew's sleep is still rough (waking many times a night), but it is improving.  Dr. T's assistant indicated it usually takes kids a week of sleeping in the helmet to get used to it.  5 more days!  Matthew sweats a lot in his helmet, so I'm glad that the weather has turned cooler (only in the 40s today).  Even with the cooler weather, the sweaty helmet smells bad! 

Tomorrow is ear tube Tuesday!  Although it is always nerve-racking when your baby undergoes a procedure under anesthesia, tubes seem like a walk in the park after the last 3 major procedures (intestines, heart, head).  Hopefully it will be as easy as we hope! 

Helmet Update

We've been following the helmet schedule. Matthew is still not a huge fan of the helmet but he's seeming to tolerate it a little better.  I'm not a big fan of it either. I can't put his face up against mine, or smell of his head, or kiss the top of his head.  I'll miss doing that for the next few months.  So, we're all getting used to it. 

Last night was the first night Matthew wore it while 'sleeping'....or 'wearing it when sleep should be happening' is the better way to phrase that.  He was up every hour or two throughout the night and every 30 minutes for the last few hours of 'sleep'.  Ugh!  Hopefully tonight will be better!

The good news is that Matthew's ear infection seems to have cleared up and his eating is improving.  Now Matthew just needs to get used to the helmet at night. Oh I so hope that is soon, otherwise it is going to be a VERY long 2.5 months. 

Delays and Rejoicing

Matthew's developmental delays are becoming more stark.  He's falling further and further behind.  The list of what he isn't doing but should be is getting longer and longer...he's not sitting up on his own for any length of time, he's not crawling, he's not pulling up on things, he's not holding his own bottle, he's not feeding himself, he's not babbling, etc.  It's a long and sad list. 

But there are big bright moments, small in the scope of the typical kid, but reasons for us to celebrate.  Matthew is starting to sooth himself.  He can put the paci back in his mouth, without help.  I feel like that is a huge win for us!  And just yesterday, while he was in the exersaucer, he reached out and played with the toys.  It's the first time he has actively seeked out a play toy.  Also not big for the typical kid, but a win for Matthew!  And I still get giddy when he gets up on his hands and knees and rocks for a few seconds. I can't imagine how exciting it will be when he crawls!

When I think of the long list, my heart aches but then it reminds me to rejoice in all of the small victories.

Helmet On

Last week I was encouraged because it seemed like my sweet, happy baby was back.  Irrationally I had worried that they changed Matthew's personality when they touched his brain. Thankfully they didn't.  I'm glad we had a few days of our old, sweet and happy baby because he's no longer happy.  He's adjusting to his helmet, has a double ear infection and is teething.  He's not feeling great and letting us know it.

Yesterday Matthew got his helmet.  They recommend easing into the 23 hours a day requirement.  Yesterday was 1 hour in the helmet and 1 hour out throughout the day.  Today is 2 hours in and 1 hour out.  Tomorrow is 4 hour stretches.  Sunday is 8 hours.  Monday he'll start wearing it for 23+ hours a day for the next 2.5 months.  I think that we might have been a little lax about the helmet and the 23 hours requirement but thankfully we met a little boy who had this surgery and seeing him made us commit to being militant about the helmet.  A few months of pain for a lifetime of gain.  Well worth it. 

Yesterday, when the helmet was on, Matthew was crying or asleep.  I wanted to take a picture of Mattie in the helmet, and figured he would be screaming, but the moment I took the camera out, he shot me the ear to ear grin.  Ah...classic conditioning!  He knows when the camera is out, Mommy and Daddy will do whatever they can to make him smile.  Now we don't even have to do anything, he associates the camera with happiness. 

Yesterday I was counting down the moments till we could take the helmet off and today has been a bit better.  I'm sure Matthew will adjust to the helmet soon.  As well, thankfully he is scheduled for ear tubes next Tuesday.  Those two things should make Matthew happier (and us too). 

We were trying to have the doctors coordinate the ear tubes with Matthew's upcoming urological surgery, but between having issues getting the urological surgery scheduled (first open date at the end of March) and the fact that Matthew has yet another ear infection in both ears, we decided to get tubes ASAP.  That is scheduled for Tuesday morning and the urology surgery is scheduled for March 28.  Now we are just working down the surgical list and hoping all of these simpler surgeries go off without complication!

While at the pediatricians yesterday, we were referred to an opthamologist.  Just recently, Matthew has been crossing his eyes and moving them asynchronously.  The opthamologist we had been referred to has been known to have a long waiting list, but thankfully the wonderful scheduler whom I've gotten to know quite well in the last 10 months helped us find an unpublished opening, so Matthew will see the opthamologist next week too.  Busy week! I pray it will be a good one for us and all of our family and friends!

Standing Down

With Matthew's big known surgeries behind us, we take a collective sigh of relief. I joke that we can now 'stand down', as we've been on high alert for what feels like a very long time.  I'm more optimistic about our future, Matthew's future.     

But I still have fear in the corner of my mind-- I wonder what the next big, nasty surprise will be.  I think of the article about intestinal malrotation that said there is a 2-24% (depending on the study) mortality rate of children with malrotation, even after corrective surgery. I think of the article that the nurse gave us as we were preparing for surgery, of a boy with a 4Q duplication, who passed away before he was 2.  I remember that Matthew is one of two known cases in the world with his duplication, and I worry the reason the genetic team won't tell us about the other case is because he didn't make it. 

I don't think I'll ever get rid of the fear, but I hope that as time passes between us and the scary surprises that the fear will go dormant.  I hope for more time like right now, where Matthew's biggest health concern is an ear infection. I hope and pray.

Matthew 10 months

Post Employment

It is almost the 3 month anniversary of the end of my Accenture career (for now anyway).  I'm asked periodically how I like staying home. I never know how to answer that question. I didn't transition into a typical 'stay at home' situation. 

My new boss keeps me amply busy beyond the typical baby stuff.  In the past 3 months, Matthew has had 2 surgeries (heart and head), spent 3 nights in ICU and 3 additional nights in the hospital for recovery, 1 night in the ER, and has had 24 medical/therapy appointments.  He's also had 4 ear infections and countless sleepless nights. 

I can't imagine trying to juggle all of this with the demands of work.  And although I miss the people, I do not miss the juggling and guilt associated with it. I'm thankful the opportunity for voluntary separation came at the time that it did!

So, I guess my answer is...staying home is serving its intended purpose.  And for that I'm grateful!

Happy New Year!

My hopes are simple for this new year--
...a year filled with fun and fewer doctor's appointments.
...a year where the surprises are good ones.
...a year of good health and happiness for all of our family and friends!  

We wish you a very happy new year!