Jack is BACK!

He is much more himself this morning. He had a rapid sequence MRI this morning and handled it like a champ. David is currently wheeling him around the unit in a wagon. Drs. Fearon and Swift are tied up all day so they will get together at the end of the day, review the scan, and discuss a game plan with us. We will be discharged late this evening unless the scan gives us a reason not to. Everybody is happy with treating the fungal infection in the ear with just the powder. No one feels any need to treat systemically but I may just ask later today what the harm would be in being extra cautious.

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Can't Let a Little Thing like Vision Stop Play

After the wagon ride, we both took a gloriously long nap. Jack woke up before I did and has been trying a bit more to play some of his ipad games between watching his favorite episode of Sesame Street and sleeping. It takes some serious skill to play a matching game with one little slit of an eye open.

For all you pajama fans (like Alicia!), Jack dislikes pajamas. I only get him to wear pajamas to our Smith family Christmas party. That's why he's wearing regular clothes or not wearing any.

Did I mention earlier that Jack's left ear culture came back positive for fungus? We're treating it with an anti-fungal powder that we "gently puff" into his ear.

We had a pleasant surprise this evening when our friends Margaret, Elizabeth, and Catherine stopped by.

After our friends left, Jack's temperature went up a little (100 degrees) and he said that he was hurting so we got him some tylenol.

He also developed a fairly noisy expiratory wheeze and a cough so I requested that we get proactive rather than reactive and requested a respiratory treatment. He hasn't had it yet but is sleeping pretty soundly and sounds pretty good.

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First Shampoo Done!

Our craniofacial friends who treat with Dr. Fearon will recognize this milestone. The first shampoo is a big deal because until the first shampoo it's hard to get really cleaned up. We opted to do the shampoo at the bedside to preserve his one remaining external jugular IV (it's in his neck) and because Jack just did not feel up to sitting in the tub or standing for a shower.

After the shampoo, we convinced him to go for a wagon ride. Jack looks so handsome in his "new" button down shirts that Dave said, "yeah, I'd tell you not to get a big head but too late."

Yep, that's how we roll...
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My Pretty One (Finally) Sleeps

It was quite a restless night. I do not want to declare that his days and nights are backwards because I don't want it to be true. Dave and I took turns lying beside him all night. He just did not sleep well. Around midnight (it's all fuzzy now so I'm not 100% on the time), he said he had an "owie". He never gave a specific location but we got him some tylenol. It really did not seem to help much. Now it's 940 am and he's breathing deeply and sleeping. I think I'm going to take a nap too.


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Operation Wake Up has hit a Stall

Jack rode around in the wagon a bit but he was falling asleep. So we put his shoes on (IV hopefully will still work) and got him to walk up and down the hall 1 1/2 times. Then he pretty much begged to go back to bed and promptly fell asleep. On the one hand, we're thinking that it has not even been 24 hours since he had his skull cut open and on the other hand, I wonder if something is wrong....

We're waiting on his room on the regular pediatric floor to be cleaned.

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Dr. Swift Said Wake Him Up

Dr. Swift came by and he does not want to see a sleepy Jack. Dr. Swift wants to see Jack returning to his normal activity. We are working on Project Wake Him up!

Our nurse has gone to get a wagon. Jack was a hard stick and has an IV access in his foot and his neck. We're trying to preserve those so, unfortunately, we are not encouraging walking. We are hoping the wagon ride will encourage him to wake up more.

Dr. Swift won't tap the shunt until more of the swelling resolves.

We'll try to keep everyone updated.
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Roller Coaster

The arterial line is out. The catheter is out. The oxygen is off. His blood pressure is fine but we're hanging out in the ICU a few more hours because it dropped a bit this morning. They think it was from the sedation which is now off.

He's a little jumpy at times. I think it's probably because he's so swollen that he can't see much. He is still very sleepy but when he wakes up he is still very very Jack!

We got some unexpected news yesterday. Jack's VP shunt pressure was high. The front part of the shunt was doing its job of draining the ventricles but the valve which prevents the shunt from draining the ventricles too much or too quickly has "gunked up". The shunt needs to be replaced and so the conundrum begins.

I'm tired so my explanation may not be the best right now. Jack's brain needs time to fill in the new space created and the surgery site to heal. If the shunt is replaced before the dura has time to "stick" to the new forehead area, we run the risk of creating an open area for the brain to bounce around in and increase the risk of infection from a non-healing wound. On the other hand, we don't want high pressure in the ventricles to drive the brain into the space.

The neurosurgeon, Dr. Swift, will tap the shunt again sometime before we leave and we'll have another MRI scan. Then we will make a plan.

It is good to have confirmation that it really was the right time to have this cranial vault. It's not so good to be hopping back on the surgery roller coaster.

Thank you all again for all your outpouring of love and prayers. Please continue to join us in praising God for his great mercy and the miracle of restful sleep as we also continue to pray for wisdom and guidance for us and Jack's doctors.

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Quiet Night, All is Calm

I sit here continually amazed. God is great. God is good. I am thanking here for a good night's rest for my wonderful son. I am praising him for Jack breathing well without the Bipap. I thought we would have to spend the night repositioning him and clapping on his chest and keeping him from deep sleep to keep him from obstructing. NOPE. I am ever so happy to report that I was wrong.

He's woken up a few times asking for water but it's been a nice quiet night overall. I even got some sleep.

We should hopefully move to a regular room later today.
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Praise God!

It's fairly early in the night so far but God is at work. David and I are sitting here amazed as Jack breathes slowly and evenly. He begins to obstruct from time to time but we reposition him, do a little vibropercussion to get the post-surgical chest gunk moving and the easy breathing resumes! Praise the Lord! Jack has not been able to breathe like this after being asleep for more than an hour for YEARS!!!

He is on some oxygen to help keep his oxygen levels up but that has never been enough before.

It's difficult to tell in this picture but Jack's facial swelling is increasing as expected. It is expected to peak around day 2 to 3. We've tried to prepare Jack and let him know that his eyes may swell shut and he may not be able to see for a day or two.

Thank you to all of you that have been praying. Please continue to praise God for his blessings as well!
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Calling All Prayer Warriors

When Dr. Fearon opened the space at the front of Jack's head, he washed out the frontal sinuses and created a flap between the sinuses and the new space. There is a danger of infection if bacteria passes through the sinuses (a naturally open body cavity) to the new frontal space (a naturally closed body cavity).

Jack has severe obstructive sleep apnea. When he sleeps, his tissues collapse cutting off his airway. To keep him breathing at night, he uses a high pressure machine called a Bipap that basically creates a tube of air keeping the airway propped open. Dr. Fearon says that we need to avoid using the Bipap if at all possible for the next two weeks. The positive pressure air could push bacteria in the sinuses up into the new space.

Jack has not been able to make it through a single night of sleep (hour of sleep even) without the Bipap since he got it and he needed it before we got it.

This is where all of you come in. Join us in prayer as we pray that he sleeps well and maintains his oxygen levels without using his Bipap.

We have more updates to come.
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On His Way

God continues to hold Jack in his hands. We, however, had to let go and allow the OR staff, anesthesiology, and our surgeons take Jack. The waiting begins as we hold on to the promise that God has known Jack before he was placed in my womb (Jeremiah 1:5) and he has good plans, plans for a future and a hope (Jeremiah 29:11).

Thank you for all your prayers.


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Dallas Deliberations

Traveling for medical care adds a layer of complication and stress that nobody needs. When you travel for medical care, everything has to be coordinated just right. You can't just come back another day if somebody doesn't get all the orders right and have the tests arranged correctly. It has a been a long stressful day full of confusion but we seem to have gotten everything worked out.

Jack's MRI showed that his ventricles had not changed much. And that's good. Jack's head circumference is unchanged. And that's good. But Jack's head height has increased. That's not so good but no one can really explain the height since the ventricles look okay. Jack has been developing by leaps and bounds. Of course, that's good. So why are we here?

Now you're caught up to where we were (minus the high stress level from last minute changes) at about 4 pm today. Then we met with Dr. Fearon and talked and talked and talked and talked some more.

The only "known" is that Jack needs to have an anterior cranial vault remodeling to make more space around his frontal lobe. Jack's brow bone is fairly recessed and it will at some point compromise blood flow to his brain. It could be compromising his blood flow right now. Jack's developing well but maybe he could be doing better. The bottom line is no one can guarantee the perfect timing for Jack's anterior cranial vault.

We ultimately decided to continue to trust Dr. Fearon's experience and Jack will have surgery later today. The surgery will start around noon with ENT first cleaning out the left ear and replacing the tube. Then the gastroenterologist will do an endoscopy. Finally, Dr. Fearon and Dr. Swift will spend about 5 hours cutting open Jack's skull and moving the brow bone forward.
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Texas

We've reached the great state of Texas. Jack is in a great mood and is helping to keep our spirits up.
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Rarin' to Go

We spent the night in Louisiana. We got a rather late start yesterday so we just drove and drove until none of us could stand "Go hospital" any longer. I'm fairly certain that "Go hospital" way outranks "Are we there yet?" on the list of phrases a child can repeat that seriously jangles your nerves.

Thank you so much for all the love and support through prayers, good wishes, and thoughts. I really can not tell you why this surgery scares us so much.

After all, he had a cranial vault remodeling back when he was just 16 months old. He did fine but then again....that surgery began the cascade of endless emergency after emergency that kept us flying to Texas every couple of months. God held us through all of that. God was with Jack and definitely us then. God kept us going then and he's still just as big and just as good.
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On Our Way

We've decided to drive this time so we're on our way to Dallas. I don't remember ever being so worried about an upcoming surgery. I've cried quite a bit the last few days. I cry during my prayers even as I confess my belief that God is in control and his ways are not our ways. I cry as I praise him knowing that his plans are good. I could put on a brave face and pretend that I know how everything will turn out but I do not believe that it would be honoring to God who knows my heart. Yesterday I cried as I ran and prayed. It was a windy day and as I felt the wind whip around me I felt like God was letting me feel his presence. He was all around letting me know that he sees my pain.
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Found the "Surgery T-shirt"

Well, I guess I'm about as mentally ready as I'm going to get for Jack's upcoming cranial vault. My "surgery t-shirt" has been hiding in my closet for quite some time now. I have worn this t-shirt for nearly every one of his 12 surgeries thus far. And fortunately, Jack has not had to have surgery for awhile.

Before Jack, I lost a baby. I wasn't far along in my pregnancy and that little baby never showed up on an ultrasound. I became pregnant again soon afterward and was ecstatic when Dr. Sharp ordered this ultrasound so early in my pregnancy. It showed that Jack was growing to be our little boy.

I scanned the ultrasound and made this t-shirt to remind me and everyone else that God knew Jack (who did not yet have a name) even before he began to grow in my womb. I guess it must have also reminded me that God knew the child I never got to meet, too. The text around the picture is from Jeremiah 1:5 ("Before I formed you in the womb I knew you.")

Back when I made the t-shirt, I wasn't far along and we didn't have any reason to believe that our child would ever need any surgeries.

Then it came time for surgeries and the recovery room staff got used to seeing me in it.

It's just one of the ways that I use to remind myself that I'm not in charge here.


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Morning Maestro

*The picture looks a little odd because I "colored" over Jack's underwear to accomplish David's request that I not post any more pictures of Jack in his underwear on the internet. I'm sure when Jack is older he'll appreciate this.*

Jack has four great non-people loves--Irish (his green basketball), Elmo, his Ipad and music. David and I do our very best to encourage and support his interests. The problem is that we are not particularly musical. I like to sing and I've "played at" teaching myself to play the piano off and on over the years. David likes to sing some or at least does it by request of his adoring boy. But we're just not that good and we aren't very rhythmical.

Enter the itikes piano! I did not know such a thing existed but when I saw it and devoured all the information on the box declaring it developmental, educational, and a great fun way for children to learn how to play the piano using an Ipad, it just wasn't possible that it wouldn't land in my shopping basket.

Close family members who know Jack well know that Jack is not usually keen on "new". Not so with the new piano! This morning, I brought out the keyboard again and Jack began playing the ABC song. I walked around from the kitchen to complement his efforts when I realized that he was playing not with the Ipad app but while watching a YouTube video and not even looking at the keyboard. To be fair, he did not learn this song from the app. He already knew it but I've never seen him play it without even looking!

I guess he's surviving in the musical desert after all.
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Quarantine Has Begun

It's been over 3 (nearly 4) glorious years since we've had to do this. It feels like unfamiliar territory. Well it is, really. Jack was only 3 years old last time he had surgery and that last one was just replacement of ear tubes and an endoscopy. I don't even remember if we actually did a quarantine since he wasn't having major surgery and he was attending our local public preschool program.

However, 'tis the season and we've heard that our local public schools are already seeing the flu, strep, and mono. Jack's been a little "snotty" but we're hoping that it's his seasonal allergies acting up. In any event, we've got to make sure that he does not get any worse prior to his cranial surgery.

So if you're used to seeing this smiling face around town, you won't be seeing him again until after surgery. We'll get outdoors but we won't be planning any meet ups or get-togethers. We'll miss y'all!
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Questions? I've got answers.

Some people are....what word am I looking for?....well, some people just wonder things or speculate on them without ever asking and other people just come right out and ask them. Here are some answers to questions that people seem downright uncomfortable about asking but it seems a lot of people wonder.

#1 Why do you travel out of town for medical care when you live in a major medical center?

We are fortunate to live in an area where there are awesome doctors available to treat a variety of medical conditions. Unfortunately, the doctors here do not have the wealth of experience with Jack's rare craniofacial syndrome (Apert syndrome) as our team in Dallas. Jack has already had a rather complicated course so we've decided to stick with the hospitals and doctors that are most familiar with his syndrome.

#2 Why do you homeschool when your local education agency has such a fantastic reputation, especially with special needs?

Our local education agency is wonderful. They have some very dedicated people working in the system. However, Jack is a "square peg". He does not learn well in a "traditional" school environment. By homeschooling, we are able to meet Jack right where he is and meet his very individual needs from moment to moment.

#3 Even though he's not in school, he does get services through the LEA, doesn't he?

No, speech therapy is the only therapy available for homeschoolers in our area but it is not available in a way that is helpful for Jack.

Because he is legally blind, we do have supplies from our local school for the blind.

#4 Do you receive some type of government assistance?

No. The government assistance that Jack's diagnosis and needs would qualify us for are income based. We have been blessed in our careers and do not meet those income guidelines. Dave or I would have to quit working altogether and then the other of us would have to take a lower paying job. Don't get me wrong, we're not rolling in dough, we are just solidly middle class and not eligible for government programs.

#5 Why don't you make adjustments in your working life? Wouldn't you rather stay home with Jack?

Of course I would. However, Dave is able to work exclusively from home and I have a flexible job. My job does require me to be gone from home a bit but I am also able to do some of my work outside of normal business hours enabling me to spend lots of time with Jack (and David) while still working full-time. We are very fortunate in our current arrangements.

#6 Does your insurance cover all of your medical expenses?

Don't we all wish it worked that way? Jack's craniofacial team is "out of network". They are not "in network" with anyone. We are still heavily in debt for Jack's medical care thus far. However, we believe in our team and their great care for Jack (see #1).

#7 How will "Obamacare" affect you?

Neither Dave nor I have read the hundreds of pages of the act and are very aware that politicians have a hard time giving an unbiased representation of what is in the act. We vote as we feel lead (or not) and we will see what becomes of all the hype from both sides of the aisle.

#8 Are you going to have any more children?

Well, that's really up to God who can get around any plans we make but I'd rather not. I am very happy being Jack's mom. Many mothers of multiple children have told me that this is an unsubstantiated fear that they had but I'm just really not sure I could love another child this much! AND I'm 40 years old. Throughout my pregnancy with Jack, I felt that it was an experience that a woman should have when younger and now I'm 7 years older.

#9 Are you sad that your only child is not a typical child?

No. God has granted me the desire of my heart by giving me Jack. Many of my experiences right up to Jack's birth lead me to being Jack's mom. Jeremiah 29:11 (I know the plans I have for you, says the Lord, plans for good, not for evil, to give you a future and a hope) has been a favorite verse of mine since childhood. Since Jack's birth and all that we have been through, I can clearly see how God was at work in my life long ago to lead me here. It amazes me how God wove this plan together and I'm excited to see what he has in store for our future!

#10 Will Jack grow to be independent?

That's what we're working toward. He's only seven now so we've got lots of time.

#11 How can I help?

Prayers and encouraging words have supported us throughout this journey we're on.

If you live in our area and have run into us or feel that you might run into us, please don't be afraid of our "differentness" or asking questions or allowing your children to ask questions. I've posted some links over in the left sidebar with how to talk to children about Apert syndrome. If you have time to read it and prepare yourself and your children for meeting us, that would be awesome.

Financial donations can be made in Jack's name (Jack Smith) to Apert International, Inc (P O Box 2571, Columbia, SC 29202). All donations are tax deductible and Apert International will send 100% of the donation to us. You can visit them online at http://www.apert-international.org/.

Have other questions? Ask away!

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A Season of Hold Me, Squeeze Me, Be Near Me

As far as I can remember, every mother of grown children I have ever spoken to at length has, at some point, mentioned "seasons" or "phases" or "stages" that they and their children went through. Talking to mothers and reading a lot and observing other children helps me to remember (most of the time) that where we are right now is not forever and things that need to change will not and do not need to change RIGHT NOW.

Right now, in public, Jack requires very close supervision and sometimes hands on guiding assistance. We're not the mother-child pair who goes to the playground/water park so mom can take a break and relax while child burns off energy while playing with other children. In very familiar places without large crowds, Jack and I are both okay with him running off and playing as long as I can see him and he can find his way back to me.

Jack's interests are not the same as other children. He is not yet at a stage of cooperative play with other children. There is a small set of adults with whom he plays together (and not just parallel or alongside) but all of them worked hard to get Jack's trust enough to reach this stage. And they are willing to meet him where he is in play. I am one of those people and Jack is actually a people person. He wants company while he plays.

Jack LOVES being near other children and hearing them and he does try to join in their play sometimes. His language is still delayed so he needs help communicating with other children. Also, his vision plays a role in not being able to keep up with children as they dart about the playground. It's easy for Jack to "lose" the children he is attempting to play with. And he plays differently than other children; being an only child at home, vision, personality, fine motor and verbal skills probably all have a little something to do with this. So, for now, I act as a facilitator when he does play with other children.

Also, I work both out and inside our home. I have appointments that I go to and leave Jack at home (with his dad who works from home). Then, I have paperwork and phone calls that I do while I'm at home, not to mention routine housekeeping, cooking etc. So Jack misses playing with me at these times. He misses basking in my undivided attention. I think his love language may be quality time.

These things cause Jack to "need" me when we go hang out at the park but there's more.

Jack is still very impulsive. As in, he has a thought and he will often act without thinking. He'll run right in front of someone swinging. He is better about not running off into the parking lot than he was but he still does it at times. He gets in a hurry to get where he is going and he either flat out doesn't see or doesn't notice obstacles in his path--other children, curbs, steps, drop offs, chalk, bubbles, balls--and he runs right into things or falls. So I am often just there reminding him to slow down a bit or calling his attention to obstacles especially other children.

Jack is becoming more independent and I do like that I can sometimes stand off a bit and talk to other moms. But he's not yet ready to just run off and play by himself. I need to keep him in my sight and frequently find myself cutting off conversation to run after him.

All too soon this season will be over and he will be more independent and I will miss this closeness that we have. Oh I know that we will continue to have closeness, just a different kind, but I know I'll miss this.

So when you see me at the park or we come to a "meet up" and I don't come to sit and chat with all the other parents, please don't think I'm anti-social or feel bad for me because I "can't sit down". I am enjoying our season even as I am doing what I can to help Jack move forward. I will have time to sit and chat as Jack continues to develop. It's just not yet.
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