See Rodger, I told you I can't cut hair!

I have a friend, Rodger, who insists that I can cut Jack's hair. It's not hard. He'll get used to holding still and I'll get pretty good at giving a haircut. After all, his wife, Carol learned to cut his hair and their two sons' hair. I listened to him once before and said I'd never do it again but we're running short on money so I thought I'd try it again because Jack's hair is gettin' kind of long.***

So here's how it went...hey Jack, want Mommy to cut your hair? Poor guy was a willing victim...
First, I messed up the back....
I'd felt sure I could do better up top on the front but alas....
Ooops, I guess I was not paying attention when I did this part....
It's okay, Mommy, I love you anyway!
***I actually did not do all this damage. I just trimmed around his ears. His haircuts were thanks to Dr. Wellons and the neurosurgery team at Children's but I thought we could all use a little humor in our day. :)

Home Sweet Home

We're home!!!!!! We made it. Jack is enjoying being reunited with all his stuff and I am just glad to be here--clutter and all. I'll try to post some pictures later. Just wanted to let everyone know that we made it home. I can never thank you enough for all your prayers and support.

Busting Out!

We're trying to bust out of here. Dr. Wellons came by a couple hours ago and said that Jack could go home. Now we are just waiting on paperwork. Jack has 6 incisions on his head, one on his chest, and two on his abdomen. Five of them are still covered with dressings. He told us to take the dressings on the right side of his head and right side of his chest off today and clean the incisions with soap and water. On Friday, we will remove the remaining dressings which are all on the left side (of his head and abdomen). After that, Jack can once again sit in a bathtub with a water level below his abdominal incision. He'll be able to splash so that should make him a little happier. In a couple of weeks, we will bring Jack in to the neurosurgery clinic and they will remove all the remaining stitches. Jack has always had dissolvable stitches up until now so I am more than a little concerned about how he'll do with someone putting a sharp object to his head and abdomen to remove sti!
tches whi
le he is wide awake. I'm not seeing that go down too easily but maybe he will surprise me. He has before.
In the meantime, we will watch Jack for any signs of infection. Dr. Wellons wants us to call if Jack has any redness, swelling, or any drainage from any of his wounds. He seems fairly concerned about the incision on top of Jack's head since Jack's skin is so thin from all the growth. He also wants us to call if his temperature goes above 101 degrees and stays there.
Hope to post nothing but good news from here on out!
Thanks again for all the prayers and support.
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VP Shunt Take 2 and Yikes!

The CT scan this morning looked good and Jack's cultures remained negative so Dr. Wellons removed Jack's ventriculostomy and replaced his VP shunt this AM. Dr. Price our regular neurosurgeon (in Dallas) wanted to keep the shunt in the back to keep it out of the way of future craniofacial procedures. Dr. Wellons did not want to put the shunt back in exactly where it came out because of the risk of reinfection so that knocked out the back right side of Jack's head. The incision located along the top left rear side of Jack's head (this was where they went in to remove the old left subdural shunt) has an area that is having a bit of difficulty healing so Dr. Wellons did not want to compromise blood flow any further. That knocked out the rear left side of Jack's head. Jack's new VP shunt is located on the top of his head on the left side. Dr. Wellons said that he used the endoscope and looked around in the ventricle. The third ventriculostomy has scarred over so that explains why!
it did n
ot drain the CSF fast enough.
Now the yikes.....in the surgery waiting room, we met a woman whose little boy has had 41 shunt related surgeries and he is about 5 months younger than Jack. She said that the nurses on the neurology floor told her that there has been a recent increase in shunt infections--so not what I wanted to hear.
Jack is back in his room and resting. We should get out of here tomorrow if all goes well.

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Surgery Tomorrow

Dr. Wellons came in this morning and so far all the cultures since Wednesday have been negative so he plans to replace the VP shunt in the morning. He is raising the "pop-off" point on the ventriculostomy (drain) today to allow more fluid to remain in Jack's ventricles so we have to watch Jack not only to keep him level but also to see if he develops a leak around his ventriculostomy. Around 3 am, he will clamp off the ventriculostomy and some time in the morning Jack will have a CT scan. If the ventricles are collapsed, surgery will be cancelled and we'll have to wait for them to fill up. If the ventricles are about the same size as they were, Dr. Wellons will get the same size catheter and route it through a slightly different location. This is apparently the best scenario to avoid repeat infection. If the ventricles are smaller, Dr. Wellons will have to use a smaller catheter and thread along the same path as the old shunt. Either way, he says that if Jack makes it throug!
h the nex
t 6 months without another infection, his chances of infection drop dramatically.
In possibly unrelated bizarre good news, Jack slept last night without his Bipap. He only dropped his saturation twice and only to about 81. He has obstructive sleep apnea which should be unrelated to any pressure or fluid in his head so it really makes no sense that he was able to breathe so easily last night without any pressure support. He did have "blow-by oxygen" on for part of the night but I don't think he needed it. I turned it on before he went to sleep just so we would have it until we turned on the Bipap.
Thanks again to everyone for all your thoughts and prayers and visits and calls and emails and diapers and food and trucks and batteries and planes and helicopters and books and cards and balloons and socks and Puffs Plus and I'm sure I've left someone or something out. We appreciate everything and are overwhelmed by the support.

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Sunday Morning

Good morning! Thanks for checking in to see how Jack is doing. He rested very well last night. His evening nurse, Alaina, gave him some Tylenol around 10 pm and he nursed off to sleep by 11 pm. I don't remember him getting his midnight vital signs taken so we were obviously sleeping soundly by then. About 130 am, I put him on his Bipap because he was sleeping so deeply that his obstructive sleep apnea kicked in. He woke up a bit and protested but I persisted and he managed to drift back to sleep pretty easily. He clung to me tightly while he slept. Poor guy is almost afraid to go to sleep I think. He has been woken up too many times being poked and prodded.
We got some good news about the bacteria. It is NOT MRSA. Since the bacteria is sensitive to penicillins, the neurosurgery team switched Jack over to Nafcillin. He got his first dose last night. The resident, Dr. Harmon, has been in this morning. He says that the cultures from the OR Wednesday and from the drain on Friday are still negative. The OR culture will be final tomorrow afternoon. He will come back this afternoon and draw another sample from the drain. Dr. Harmon says that we will probably get out of here this week. He said that once Jack gets his VP shunt he will only need to stay in overnight to show that he is eating and drinking well and then we will get to go home!!!
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We're Gettin Gettin Gettin Kind of Restless

It was a restless night until Jack got some Tylenol at 4 am and settled down to quiet sleep in time for his lab draw. :) The lab tech was super sweet and felt really really bad about waking him up. He was really upset and that left eye very nearly came on out. Thank goodness I already had a lot of lubricant in it. I just slid his eyelid down around his eye and held it for a moment. It's not really a sight you want to see.
Jack is <SURPRISE!!!!> sick of laying in the bed. Fortunately, this morning Dr. Wellons told us that, sometimes on the usual neurology floor, the nurses let the kids ride in a wagon with the drain leveled out on an IV pole. It all depends on the nurses' comfort level. Our drain is already on an IV pole so we would just have to re-level Jack sitting up in the wagon. I am hoping that they will let us give it a try.
Jack has developed some troublesome respiratory symptoms. He's got this little weak ineffective cough and his usual crystal clear chest sounds a bit raspy. I've talked to the nurse and respiratory therapist. We're going to give him breathing treatments every 8 hours today and hopefully that will help things. I think getting him up will really make a difference so I am really going to kind of push for that.
Yesterday, Jack actually tried to draw on the little magnetic board Annie from CCA gave him after his last surgery in Dallas. That's a big deal because Jack is really not into drawing, coloring, sorting, or really any fine motor activities. Maybe he has started to realize you can have fun sitting still without watching a Baby Einstein or Signing Time DVD. He also really enjoyed looking at some books. There was, of course, "The Book" made by Jessica but he also has a new book that Michi (Michelle) bought him with Mommy and Baby Animals. It has these really easy to turn pages which is great but Jack really did look at the pictures and signed some of the animals. It's funny. If Jack can't remember the sign, it's a cat. :) Ms. Donna brought Jack a cool puzzle and a little airplane and wind up tractor and dog. We have not tried the wind up dog yet but the plane and tractor are definitely a hit. Of course, Jack's little snowman (a Christmas present from Uncle Noah) has remained hi!
s bed bud
dy and is handy for biting on and loving on and generally being pummelled but the snowman does not seem to mind. The snowman has been joined by a new friend, a soft cuddly Panda that our friends Cat, Don, and Teeter sent from South Carolina. This little panda is super soft and Jack had a ball alternating kisses on Panda and Snowman. Of course, we brought Jack's gears-you push a button, it lights up, plays music, and the gears spin. David brought a few more things from home that we are going to try today to shake things up. I'm kind of hoping that Jack might really learn to enjoy quiet activities more. David even brought the playdough and floam so maybe Jack will actually enjoy and not just tolerate playing with them. Oh yeah, we've also got a few of Jack's "roll a round" balls [the clear plastic balls with toys inside them]. He loves spinning those around and clacking them tohether. If you've got any other suggestions of things that can be played while lying in a level plane!
in bed,
I'd love to hear them especially from those of you (HELLO THERAPISTS!!!) who know Jack's abilities and the kinds of things he needs to work on. Just drop me a line at empwrn@bellsouth.net.
***Here's the latest news on our shunt status. The cultures from the shunt tap in the ER and the spinal fluid from the OR on Tuesday are growing staphylococcus aureus (the most common bacteria found in shunt infections). We are awaiting sensitivity studies to determine whether we are dealing with Methicillin Resistant (MRSA) strains. If the bacteria is sensitive to Penicillan (Methicillin) then Dr. Wellons will switch Jack's antibiotics to Penicillan. In the meantime , Jack continues to receive Vancomycin which is what he will stay on if the bacteria is MRSA. So far the culture taken from the OR on Wednesday and the culture taken from the drain in the room yesterday are negative. One of the residents will get a culture from the drain again tomorrow. Once two consecutive cultures are negative, Dr. Wellons will take Jack back to the OR and put in a new VP shunt. A final culture result takes 5 days so the Wednesday sample will be final Monday afternoon. Dr. Wellons said that he!
won't ha
ve to wait until the second culture result is final. Once he gets one culture that is negative at its final 5 day point, he'll take the second culture remaining negative for a couple of days as an indication that the infection has cleared and it's time to replace the shunt. If the infection does not appear to be clearing up (so far that does not seem to be the case), Dr. Wellons will do some more extensive surgery to open up Jack's head and get the rest of that old subdural shunt out.
A few folks have asked whether the VP shunt has to be put back in. Unfortunately the answer to that question is an unequivocal absolutley! With the external drain currently in place, we know just how much extra cerebrospinal fluid Jack is making on a daily basis--it's a lot! If we don't put in a VP shunt, all this fluid will accumulate in his ventricles and they cannot drain or absorb the fluid fast enough, there will be pressure on his head causing who knows what damage and his head will continue to grow. As bad as this has been, it has definitely confirmed that we made the right decision regarding putting the VP shunt in in the first place.
We can feel your prayers and we still need them.
Also, thank you again to Edie, Dad (Opa), Steve (Pop), Michelle (Michi), Rob, Mandy and Andrew (The Mandy-Andy show), Donna, Nana, and Aunt Ninfa for coming to visit Jack here at the hospital (and bringing us food and stuff). It's so strange for us to be here at home where we have so much help and it's been awesome!
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Sleepy Irony

Good morning!!! We slept! Jack is still sleeping and I am hoping to go back and join him. I woke up at about 3 am and realized that we'd been sleeping so hard that I did not see our evening shift nurse when she came in to do her final check and I had not seen our night nurse at all. They come in hourly. I don't even remember Jack getting his midnight vital signs taken which means Jack slept through it too! So here's the irony, Jack is still snoozing away but I'm so excited that we got some rest that I can't go back to sleep. How funny is that?
I'm refreshed and renewed and once again enjoying the fact that my sweet baby likes to cuddle up next to me in his sleep. I'm Jack's Mommy and I'm back! :)

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Steady as She Goes

So this morning things appear to be settling down. The CT scan showed a very small amount of blood from getting the subdural shunt out but not enough blood to be a problem. The CSF from the OR yesterday has not grown anything yet. Dr. Wellons said that he would culture Jack's CSF every other day and put the VP shunt back in when the infection was resolved.
Jack is still a bit restless and we are trying to keep him settled. I am going to take a nap so that I can be the Mommy I want to be.
There is a great benefit to being in the hospital here at home. We have had so many wonderful friends and family show up to love us in person. It's been wonderful and we don't quite know how to act! Thank you everyone!
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Aaaaaccccckkkkk!!!!

It's 2 am. Jack has had the most restless night of his life. It's like he is just physically unable to lay still. He has been nodding off but even in his sleep he is kicking out with his feet, wanting to rub his fingers all over and around mine, and he keeps sliding around the bed. The nurse keep having to recalibrate his external drain.
I have finally resorted to putting on one of his Baby Einstein DVDs in the hope that he would get his mind focused on the movie and lie still. I am so tired and unfortunately, I'm having a hard time being the sympathetic mother Jack deserves. I just want to rest for a few minutes. I just want to not be kicked or poked for a few minutes. Jack's nurse just gave him some Tylenol in case discomfort is causing his restlessness. I feel bad because I did not even think to ask Jack if he was hurting. Please pray for us. Jack needs his Mommy to be loving and sympathetic not tired and crabby.
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In the Room Again

Well that was one of his fastest recoveries. We are in the room. I'll keep you posted.

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News from Dr. Wellons Again

Dr. Wellons removedthe new VP shunt and placed an external ventriculostomy drain. Dr. Wellons said that he had a very difficult time removing the old subdural shunt. He believes that he removed about 90% of the shunt. Dr. Wellons is concerned about possible bleeding and plans to get a CT scan in the morning. Jack will stay on his IV antibiotics. If the infection does not clear easily, Dr. Wellons will plan to go back in and get the rest of the shunt.
Jack is being closed up by the residents and then he'll be in recovery for awhile as usual.
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Back in Surgery

Jack's cerebrospinal fluid was infected. Dr. Wellons confirmed that both the shunt tap and the fluid sent from the OR grew bacteria. They just took Jack back. Dr. Wellons will remove both the old left-sided subdural shunt and the new VP shunt. He will place an external ventriculostomy drain. Jack will stay on his IV antibiotics. Once Dr. Wellons is satisfied that the infection has resolved (2 or more negative cultures), he will place a new VP shunt. Keep those prayers coming.

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As Quiet As A Child

Dr. Wellon's nurse came in and said that they got a call from the lab saying that the CSF is "growing something." If it is truly "growing something" and not contaminated, then Jack will have to go back to the OR and have both shunts removed. For now, he is not allowed anything by mouth and we are waiting for Dr. Wellons to finish his current case. When he is finished, he will consult with the lab and come talk to us about taking Jack back to surgery.
Jack has been lying here asleep nestled in the crook of my arm as if he has no care in the world. I have been quietly praying over him reminding myself and God how I have seen his hand upon my life and Jack's and how I can trace back over time how he slowly but surely and purposely prepared me to be Jack's mother. I know that God has a plan and a purpose that I cannot yet see. I was asking him to help me be still and wait on him and then I checked my email and found this encouragement.
So I thought I'd share it with you.

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-----Original Message-----

From: Purpose Driven Life<dailydevotionals@purposedrivenlife.com>
Subj: February 20, 2008 - As Quiet As A Child - Daily Devotional
Date: Wed Feb 20, 2008 2:19 am

As Quiet As A Child
By Jon Walker

I don't concern myself with matters too great or awesome for me. But I have stilled and quieted myself, just as a small child is quiet with its mother. Yes, like a small child is my soul within me. O Israel, put your hope in the LORD — now and always. (Psalms 131:1b-3 NLT)

Today's devotional actually comes from my sister, a godly woman and serious prayer warrior. She e-mailed this morning, saying she'd been thinking the peace of God that passes all understanding.

She said she'd spent some time meditating on Psalm 131 –

• Verse 1b – "… I don't concern myself with matters too great or awesome for me …." We are free to live out our purpose when we relinquish control of the things that don't belong to us in the first place, such as worry about things over which we have no control, or trying to control something we have no business trying to control.

• Verse 2 – "But I have stilled and quieted myself, just as a small child is quiet with its mother …." I trust, even when the outcome seems a long way away. A nursing child wants attention now, but weaned child trusts and is content to wait.

• Verse 3 – "… Put your hope in the LORD — now and always." We hope in the Lord with confident expectation. In other words, we truly believe he will answer our prayers, that he will respond, that he will get us through. You can declare confidently that the Lord will pave your way and walk with you and keep your feet from stumbling. He's done it before, and he'll do it again!

Praise God for his peace! It is through his peace that we can do all things – and endure so much. It is a peace that passes all understanding.

What now?

• Overly concerned – Is your peace undermined because you're concerned about matters that are not even your responsibility? Or a matter over which you have absolutely no control? Ask God what should be on your "responsibility" list; ask him what items you should remove from your list. Psalm 131:1b – "I don't concern myself with matters too great or awesome for me."

• Prayer, but delayed gratification – Are you at peace because you have learned to trust God and wait? If not, ask God to reveal what makes you demand an immediate answer from him, and talk to him about what he reveals. Ask God to help you learn to trust him – and to wait. Psalm 131:2 – "But I have stilled and quieted myself, just as a small child is quiet with its mother. Yes, like a small child is my soul within me."

• Confident expectation – When you say you hope in the Lord, then really hope in the Lord. Expect him to come through for you – at just the right time in just the right way. Psalm 131:3 – "O Israel, put your hope in the LORD — now and always."

Back in a room

Jack is back in his room on the floor. He had his usual breathing difficulties following surgery but they managed him quite easily on his Bipap and they let us come on back to the floor. The big challenge now is that Jack is on bedrest while he has the shunt externalized. It does not require as much calibrating and such as a run of the mill external ventriculostomy because he still actually has his shunt in with the control valve in place. He'll have a few days of IV antibiotics and of course wound care to his semi-open abdominal wound. They will continue to monitor his cerebrospinal fluid. I'll try to keep the blog updated but there may not be a lot of day to day things happening. The next few days will hopefully be mostly about getting test results back and somehow keeping energetic Jack (yes, I can already tell he is feeling better and his energy is picking up) in the bed and occupied.

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News from Dr. Wellons

Jack is being "recovered" now. Dr. Wellons said that there was definitely infection in the abdomen. He made an incision in Jack's upper chest, cut off the shunt tubing, and connected it to an external bag. He then pulled out the remaining tubing from the abdomen below. He sent off cultures from the abdomen and the CSF fluid he collected during surgery. In the meantime, he is adding more antibiotics to be sure to cover possible bacteria. When the cultures come back, he can be more specific in antibiotic usage. In the meantime, Jack has a semi-open abdominal wound to allow any further infection to drain on out. When Dr. Wellons is satisfied that the infection is resolved, he will add extension tubing and re-tunnel the shunt tubing into another location. Continue to pray that this is the end of infection.
Jack is scheduled to return to our room on the floor unless anesthesia feels that he needs to be monitored more closely.
Now that Blogger is allowing me to update from my phone again. I will do my best to keep the blog updated. Of course, Jack comes first.

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In Surgery

Jack is in surgery. Things are done a little differently here but the surgery staff is super nice and they all thought Jack was adorable and BIG and STRONG. I'll keep you posted.

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The Plan

We just met with Dr. Wellons, the neurosurgeon. Jack's abdomen is not as red and angry appearing since he got the antibiotics overnight. Dr. Wellons was very encouraged by that. Since there is definitely some type of inflammation, he is going to take Jack to the operating room and open up his abdominal incision. If he sees pus, he will clean it out and pull out the tubing and externalize the drain. Jack will get IV antibiotics and when the infection clears up, Dr. Wellons will re-route the tubing. If there is no pus or inflammation, he will just close Jack up and Jack will continue receiving IV antibiotics.

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Jack in the hospital

Jack's low grade fever continued to move up over the weekend and he never really developed any very specific flu-like or viral symptoms so we talked with Dr. Price yesterday morning and she told us to come on in to our local Children's hospital. When we got here, what really got all the attention is an area on his abdomen near but not at the incision site that started out a light pink and became angry red and splotchy. A CT scan of the abdomen showed some inflammation around the new shunt tubing and less inflammation around the old subdural shunt tubing. A CT scan of the head actually looked pretty good except an incidental finding that the ventricles appeared slightly larger than compared to his May 2007 scan. The blood work (ESR, CRP) shows some inflammation but interestingly enough his white blood cell count was not elevated. They also did a set of x-rays called a shunt series and that, apparently, was fine. They tapped his shunt. The cerebrospinal fluid was nice and clea!
r in appe
arence. They are waiting for the cultures to grow. It takes about 48 hours-you just have to give it time. The neurosurgery resident said this morning that it looks clear so far and that the gram stain was negative which is confusing. You can have a negative gram stain and still have bacteria. All bacteria is either gram negative or gram positive.
Jack has continued to have a fever throughout the night (102.6-102.8) and slept VERY restlessly. He babbled and signed for hours as he tossed and turned. He did not even sleep deeply enough to be put on the Bipap until after about 330. He has had two doses of IV Vancomycin (antibiotic) now. His abdomen looks a lot less angry.
The tentative plan for now is to remove both the old subdural and the new VP shunts, place a ventriculostomy (an external CSF drain), and do IV antibiotics. Jack will have to stay in the hospital until he finishes the antibiotics and they place a new VP shunt. He has to remain at one level position as much as possible. Every time he changes his position, the staff will have to clamp off the ventriculostomy and recalibrate. For those of you who have met Jack, you know that happy active Jack is not really one to lay around. We are hoping to keep him happy with his videos and books and quiet activities. The problem is that he really is not much into sitting down/laying down activities like coloring or playing with say blocks or other fine motor type stuff. Suggestions would be greatly appreciated. I'd rather that he not just be stuck with nothing to do..
Thanks for the hugs, thoughts, and prayers.

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Spirit of Fear?

I have a friend who often reminds me that the worry over your children never stops. Surely though, you do get to a place where you don't feel like your heart will stop if anything goes wrong, right?
Jack has had a low grade temperature all weekend. So, of course, we are worried about his shunt. He is a little congested, his stools (which are still the usual once daily) are a little looser than his normal solid stuff, and he is not as active and happy as he usually is. Are those symptoms vague enough for you? How bad is it that I find myself wishing that he was having some obvious diarrhea? I bounce back and forth from being sure that this is just a virus and his energy level and appetite are picking up to worrying because even though his other symptoms appear to be getting better, his steady low grade temperature is edging upward. Say some prayers for Jack that he'll feel better and that his parents and doctors will have wisdom in treating him.

Enough About Everyone Else, How's Jack?!!?

Jack is great! Daddy has been trying his best to keep Mommy and Jack away from one another (no easy task!). He has not been sick AT ALL. Shout it with me--HAAAAAALLLLEEEEELLLLLLUUUUUUUUUJJJJJAAAAAAAAAHHHHHHH. We had a bit of a scare with his VP shunt incision. Just before David took him into the exam room for our family doctor to do the wound check, he noticed that one end of the incision appeared to have some drainage. Dr. Aizenman was not concerned and said that it was probably caused by the sutures which were sticking out since they are a "foreign body" and advised David to clip the sutures when Jack slept. We snipped the sutures last night, cleaned up the area with peroxide and saline solution and called a report in to Dr. Price's nurse, Jody. She told us to keep the wound cleaned, keep the scabs off, and watch it carefully. If he continued to have drainage, she said to take him to a local neurosurgeon to determine if the drainage could be a cerebral spinal fluid leak. EEEEKKK!!! There has been no drainage today! Whew!
He misses school terribly because he has been out all week. Hopefully, he can go back soon.
Since I've been sick, I have not been taking pictures so I dug these up from last year.

Here's Jack enjoying himself post-surgery last January in the PICU.


When we got back home, Louisa and Charlie (not in the picture--he was a tiny baby back then) came by and brought dinner. Well, ok, their Mommy and Daddy came too. Carla actually cooked up a wonderful dairy free dinner and bagged up some cheese just for David.
Here's Jack at last year's children's race at his school. He was not an independent walker yet so he was using the grocery cart to get around. Look how much he's grown!!!

Mommy Down, On Her Way Up, and Knocked Down Again

That little cough...well, by Monday morning, when the fever was added to the aches and chills, David and I did a little health math and called our family doctor who agreed--sounds like it adds up to the flu. He spared me the trip to his office and called in Tamiflu. A quick call to my wonderful mother-in-law provided the soothing comfort of chicken soup. Who doesn't need homemade dairy free chicken soup when they are feeling sick? Fast forward 48 hours and I was feeling much better but still felt like I had razor blades in my throat. Is it possible to have the flu and strep together? We did not know so off to Dr. Aizenman I went. He had bad news. I either have the flu along with an icky stomach virus thingy going around or I never had the flu and feeling better after 2 days of Tamiflu was a coincidence. Either way, he predicted the tummy troubles were on their way. As a matter of fact, I had trouble with my lunch before I ever got to his office and by the time I got home after my appointment, well let's just say the man knows what he's talking about. I got a steroid shot so that probably accounts for the small burst of energy I am experiencing this evening but I still feel drained, achy, and the tummy is all rumbly.
Lucky for us Steve and Michelle are feeling much better and they brought over dinner for at least 2 nights(will probably be even more than that because it's a lot of food and because of my reduced appetite) and still offered to go to the grocery store.
If you get knocked down, it sure is great to have friends there to help pull you back up.
Hopefully, just a couple more days of this and I'm done. I don't really remember how long Dr. A said to expect this to last but it can't be that long, right?

Fox 6 Loves Our Family

Well, what can I say? Jack apparently gets his TV star quality from his Nana (great-grandma Lovina Phillips). Here's a short news clip about a dance class that Nana and my Auntie Ninfa take together. They are both interviewed toward the end of the clip. The recent surgery and recovery they are referring to is a total hysterectomy in which Nana's doctor was able to remove all traces of ovarian cancer. Doesn't she look absolutely fabulous for 1) being 80 and 2) just a few weeks out from major surgery?
Enjoy!

http://www.myfoxal.com/myfox/pages/InsideFox/Detail?contentId=5769070&version=1&locale=EN-US&layoutCode=VSTY&pageId=5.7.1


PS. I know! I've got great genes!!!

PPS. Blogger won't let me post the address as a clickable link for some reason tonight but if you cut and paste the above address into your browser, you should be able to get to the video. If that does not work, go to www.myfoxal.com. Scroll down and you will see a box labeled "Seen on TV" on the right hand side of the screen. Click on FOX6 Family Health: Dirty Dancing. That should load the page with the video clip. [Nana, call me and I'll tell you just what all of that means :)]

Supporting The Marathoners

This morning Jack, Lisa, Joy, and I braved what could have been frosty wintry weather and headed out to support the runners, walkers, and the run-walk-runners doing the relays, the 1/2 marathon and the marathon. The rest of our crew was either sick or taking care of the sick. We hope all of you feel better soon!
The weather was awesome. The sun was shining in a bright blue sky and it was cozy warm in the sunshine if you were bundled up in sweatshirts or long sleeve shirts with jackets like we we were. We were in a great spot. Jack's school set up their water tables to be right before the last mile of the whole thing for both the 1/2 and full marathon so when people made it to us they knew they were almost to the end. Many people did not realize how close they were until we shouted it out to them and quite a few put a new spring in their step as they realized the end was so near! It was really great to see all those people running, walking, huffing, puffing, and sweating away for such good causes as Jack's school, our local children's hospital, and a medical transportation service for low income children. Joy, Lisa, and I took turns handing out water, cheering everybody on, and walking with Jack.
Here's a shot of Lisa cheering on some runners as they went by. Jack let Joy stroll him around for a few minutes.
He spent most of the three hours pushing his stroller. I even put his bag in the stroller to weigh it down a bit but Jack was a bundle of energy.

We decided that next year Jack should do the 1/2 marathon. We will need Steve to get well to escort Jack through the 1/2 and keep him headed on the right path. Who wouldn't donate to that team?




Jack was such a great little race supporter and we were hungry and tired afterward so we headed to McDonald's for hamburgers. I seem to have come down with a bit of a cough so please keep me in your prayers. I truly don't have time to be sick!!!

Mercedes Marathon

This weekend is a big one for Jack's school. It's Mercedes Marathon Weekend. This is one of the biggest fundraisers that they have. Unfortunately, as you can see by our ticker, we did not reach our personal fundraising goal. I'd like to think that we would have made it if we'd had the kind of time that we planned on using for fundraising. Thanks again to everyone who so generously donated and thank you to everyone who may not have been able to donate but prayed for our efforts. Even though the race is over this weekend, fundraising efforts continue and you can still donate through Jack's Firstgiving page. Just click on the fundraising ticker on the left.

Race weekend starts off with a children's race at Jack's school. This year, I had a photographer so I was able to get a lot more pictures of the racing event (Thank you, Aunt Ninfa!).

Here's Jack at the starting line next to one of his schoolmates. Cute little Annaka was in Jack's class last year.

Here are the rest of the racers in Jack's heat. Annaka (classmate from last year), Rachel (classmate this year), Peyton (classmate this year), and another little schoolmate of Jack's.
Look at that game face! He's ready to ride!!! [Actually he was kind of mad because he had to wear the helmet. We are being more conscientious about bike safety and making him wear a helmet even when he rides his tricycle. Dr. Price would be soooo proud!]
Here is part of Jack's cheering squad. The third girl from the right is Veronica. She made the sign that says "Go Jack Go!" Veronica and her class came to cheer on all the racers. Veronica's mom, my great friend Edie, and her sister Nell also came to cheer Jack on.
This is a sweet young man named Russell who made a poster to cheer Jack on. It says "You can do it. I know you can. You Rock! Go Jack! Win Win Win!" He did a great job!
Wow, I just realized that I did not get a picture of Nana, Aunt Ninfa, and Mimi who also came out to cheer Jack on. Thanks for coming to the race, guys. It was nice to have all the support and help watching Jack while I got his trike and all.

Finally, here is Jack saying, "Let me go! I want to run wild!" I foolishly let go of his hand for a moment and few seconds later he bit the dust because he did not step up when he got to the sidewalk. It was a bad Mommy moment. Fortunately, he seems to be just fine. He caught himself by throwing his arms out in front of him (Miss Melissa, I know you are proud of that!). He just has a little scratch on his forehead where he laid his head down on the pebbly sidewalk.

The Children's Race got some local news coverage and they happened to go live while Jack was racing. Here's a link where you can see a few seconds of Jack in action. The little girl leading the pack is Annaka. I can remember when they were trying to get her to crawl to the snack table last year. You'll also see Rachel who is a new walker. It is so exciting just to see her go. Bringing up the rear is precious Peyton who gets better and better at walking. She is actually progressing to using canes in the classroom. Jack's school does amazing things for these kids!

http://www.myfoxal.com/myfox/pages/Home/Detail;jsessionid=EDF5815B8F743A63D67FC7382C8AE79F?contentId=5725066&version=1&locale=EN-US&layoutCode=VSTY&pageId=1.1.1&sflg=1

Jack, my sister in law Lisa, our friend Michele (if she is any better and I'm not sure she will be), and our friend Joy and I will be volunteering at the school's water table on marathon day so hopefully I'll be able to get a few pictures of that. Oh, also, if Steve is feeling better, he will be running on Jack's behalf so maybe I can get a picture of him running and post that too.

Home for Now

I know that many of you were upset by the lack of posting while we were out of town but Blogger has changed its security measures and I can no longer post straight from my phone. We don't carry a laptop with us so unless I get a chance to use the computer at the hotel or at the hospital I am unable to post to the blog. And y'all know how I am. I want to be with Jack not out in the waiting room outside the PICU.
Jack spent a very restless night in the PICU. He did not breathe well with their Bipap machine. Each specific brand and model has its own algorithm that you get used to. Jack simply was not used to their machine. We are going to try to get our machine approved by Biomed in advance next time. The hospital staff actually lost the paperwork that we got our respiratory supplier to fax to us. I hope that we can get this stuff sorted out early next time and have approval in writing so we won't have this problem.

After reviewing a post-surgery CT scan, Dr. Price discharged Jack and said that she wants to see him again in three months. She wants to get a CT scan and physically examine him and then she and Dr. Fearon will discuss when to do his next surgery. In the meantime, she said no additional precautions are needed but she did deliver a short lecture on bicycle safety and wearing of helmets. After talking it over, David and I have decided that we are going to start having Jack wear his bike helmet even when riding his tricycle, even indoors at school. It's better to be in a good habit than to have to transition when he begins riding his bigger bike.

Oh, we also heard back from Dr. Stager. He said that we should resume patching Jack's right eye 1-2 hours a day to maintain the vision in the left eye.

Enjoy these few pictures....I gotta go get in bed!

We got to meet Annie from CCA. Jack was not feeling all that great when Annie first got there and Annie, also a mom of a toddler, just hung out until Jack felt up to at least a little hand shake.

We had a little time between checking out of our hotel and checking in at the airport so we stopped at a park in a very nice section of Dallas. Jack loves loves loves trees and they had some really big ones so he got to actually get in the trees. *


Look at this "face of determination" as he heads off across the park. Where was he going? Concrete, baby! Our baby is a concrete boy. I guess it comes from starting out in our apartment where his daily adventure outside meant sitting on our little concrete patio?
Mommy and Jack playing through the nets at the tennis courts.

After all the running around at the park, Jack was good and ready for a nap on the plane ride home. Look at the wings on the snowman!
One more thing before I finally head off to bed. Since surgery, Jack is making a couple of new sounds and he is definitely cutting some new teeth.

Thanks again for all the love and prayers.

*Per David's request, I am adding the following disclaimer: I cropped David out of the pictures of Jack in the trees. At no time was Jack sitting in the trees unsupported. :)