Year 2007

While I am glad to see an end to 2007 we had so many great experiences this year also. We met a ton of awesome and amazing people.

January started with my tolerance level for Gabe's symptoms hitting overflow on my quest for answers we had a miserable visit with our once loved neurologist. After a very strongly worded email to our CF (Craniofacial team) the ball started rolling. We opted for a 2nd opinion for Gabe and when the awesome neurosurgeon told us that with Gabe's issues he would refer him back to Dr. Frim we had affirmation that we were in the correct place. January the Twins turned 5 and auditions for Sleeping Beauty (the ballet) were held. Lindsay was a Green Dragonfly and Gabe Grumpy Dwarf.
February brought the diagnosis of Chiari Malformation 1 (CM1). 2 MRIs for Gabe, a few (long) clinic appointments, worsening of Hannah's symptoms and talks with the neurosurgeon about her.

March brought more med changes for Gabe, MRI for Hannah, diagnosis of Chiari for Hannah, Speech therapy for Fayeth and Soccer for the Twins.

April brought MORE soccer, MORE ballet rehearsals, an extra performance, more meds for Gabe, LONG clinic appointments with both Frim and McKinnon.

In MAY Fayeth turned 2. Her speech therapy continued and she started making progress. :)

Lindsay and Gabe performed in Sleeping Beauty!
We had Fun at Disney World. We went with Gramma, Grampa and Aunt Paul. It was Aunt Paula's first trip.
MGM

Photo above: back row-Sandy (gramma), Paula with Lindsay, Me, Darren (the hubby)
Front Row-Hannah, Fayeth, Gabe and Grampa in the scooter.

Face Painting at Animal Kingdom

Sufari Minnie (Hannah)-Spider Girl Lindsay-Dino Gabe

Breakfast at the Crystal Palace with the Flanders

Fayeth and Corbin. I will have to find the picture from last year, same place, same pose.

Crystal Palace with Eeyore

Hannah-Lily-Lindsay-Kelsey-Gabe and Jason

Fun at Mickey's House with the Tabors

Gabe-Victoria-Lindsay and Hannah

We also went to a get together at Amy's house up in Chicago. :) We got to meet our friends (Aritha, Micheala, and Sean) for the first time. (I did not get any good pics of the kids together. If anyone did can you please email me one). This was the day that Gabe took a turn for the worst. My non violent little man took a toy and smashed Robin in the face with it. *I* was mortified and Robin and her mommy Dani were awesome about it. Gabe's behavior change landed us in the ER before the end of the month and with a surgery date.

June brought lots of pain, Gabe's refusal to get off the couch and do anything. When he did he would scream at us that he wanted to go to the hospital. June also brought recital. It also brought consumed coins before his surgery.

Recital 2007

Gabe, Lindsay, Miss Angela, Hannah & Fayeth

June 27th we arrived at Comer Children's Hospital (University of Chicago Hospital). Gabe had a posterior fossa decompression. That is where they remove a section of bone from the back of his head near the foramen magnum, remove part of his 1st cervical vertebra and open the lining of his brain (the dura) and placed a patch in it. The cerebellar tonsils are placed back where they belong.

July we went home from the hospital. I had nasty evil family members trolling me which resulted in me deleting a ton of stuff from my blog. We ended up at our local ER with meningitis, of course they missed it and they send us home after doing a CT that looked EXACTLY like the one that he had pre-op. Later that morning we went to Comer's and was diagnosed with Chemical Meningitis, CSF leak and pseudomeningocele after he had an MRI and LP. He started high doses of steriods and we were on our way.

August started with a routine trip to the opthamologist. Lindsay needed glasses and Gabe had papilledema (swelling of the optic nerves). Then Hannah turned 4.
A trip to clinic ended up with a return trip the next day to the OR for a Lumbar Puncture to measure Gabe's pressure due to the pain, papilledema and his general health decline. It was elevated and we got a NEW diagnosis to add to our previous ones. Pseudo Tumor Cerebri (PTC). Our game plan, back to the OR at the end of the month for a lumbar drain trial. Before that could happen Gabe developed a fever and complaints that his neck would not turn and of course our friend vomiting. Back to Comer ER and 24 hours at the hospital. The drain trial was 8 days in the hospital and 1 at the RMH. The outcome of the drain trial....he needs an LP shunt. Dance started back up for Lindsay and Hannah. Fayeth was still progressing in speech.

September brought a lot of pain and vomiting for Gabe. Auditions for the nutcracker for things 1,2, &3 all were bon bons :). We tried to resume "school" they are in 1st grade now. Flu shots came around and 2 days later we had facial drooping. Back to Comer ER. They have us all freaked out that he has seizures, a stroke or the starts of guillian-barre syndrome. 3 days in the hospital, CT, MRI, LP, EEG it is a temporary viral neuropathy secondary to the flu vaccine.

October brought our surgery date up 2 days. Surgery came and went with a nice new programmable LP shunt placed. We raised money for Comer Children's Hospital and did a 5K walk. Strollers/wagons: Fayeth-Hannah-Riley J-Alex J
Standing: Gabe-Lindsay-A Clown- Kurt J

And Halloween

Lindsay & Hannah (Fairies)-Gabe (Dr. Frim)-Fayeth (Fairy)

November brought NO TRIPS TO THE HOSPITAL!!!!! We had company (Aunt Paula) and spent Thanksgiving here with 25 family memebers that we know and love. :)

December brought 2 boughts of strep for all 4 kids.

A Nursing Home Show

Back: Donelle B.-Lindsay-Gabe-Alexandra S
Front: Audrey B.-Carissa S.-Hannah-Alexis

The Nutcracker
Back: Aunt Becca-Lacey-Sam-Gramma-Grandma Norah Marks (U.Tom's gramma)
Kids: Fayeth-Hannah-Gabe-Lindsay-Michael

5 Christmas parties over 4 days. This one being the Wilson Family Christmas
Eli(3)-Hannah(4)-Anthony(2.5)-Leila (9m)-Fayeth (2.5)-Billy (6)-Gabe (5)-Lindsay(5)

And Of course a trip to the OR on Christmas Eve. :)

The best part of the year would be the new friends that I have made this year because of this journey. Their knowledge has meant the world to us, their support has helped us through the dark times, the knowing looks, the true understanding I can never begin to tell them thank you enough. Our "old" friends have been awesome. Thank you all for the cards, care packages, emails, comments on the caringbridge page, everything you have done for us over the past 5 years. It has been a long journey and it is not over. Probably...will never be, but THANK YOU ALL for making 2007 a great year.

The Mall...

I DESPISE the mall at Christmas Time. Of course that is where I have to go so we can see SANTA. So Wednesday my mom and I decided to venture out with the children. We opted to head to the Mall first. We thought we would hit a few stores, see Santa and head out for lunch just after the normal "lunch" time.

Get to the Mall, unload the kids and realize that not only did I not pack the stroller Fayeth harness is in my MOMS car. UGH! Give the kids THE LECTURE about holding hands, not wandering away, blah blah blah. So in we go. Hit the bathrooms (again) because you know. Mom bladder + freezing cold wind=URGE TO PEE.

We started at the farthest point away from SANTA so that we could get some shopping done. JC Penny for neckties and I realize that my daughters have really good taste in ties, but had to explain that I needed solid colored ones to stitch on. Pay for those.

Look at the 700 gazillion stores and booths that sell ornaments looking for a "BUNCO" themed ornament for my mom. Go to Borders for gift cards for the "grandkids".

There were 2 moms walking with 7 kids in tow. *I* had to be a smart ass and I looked at them and said, "Are they ALL YOURS?" Being that when I am in Fl with Kristin and people ask us like we are a disney attraction with all our children, I just could not pass it up. The ladies laughed and we talked about that lovely comment. LOL

We head to see Santa. We are the 3rd people in line. 5 minutes...line does not move. 10 minutes line does not move. Finally an employee comes over to a lady in front of us and says, "We are waiting for your sister. We pulled up her pictures again and we need her approval before we print them. We cannot take anymore pictures until we print these." The lady in front of us says, "Well maybe she went to sit down. She is 5 month pregnant." They look around. Another 5 minutes goes past, we wait. Now this is really starting to irk me. #1 if you are waiting for them to reupload your pictures then keep your ass at the kiosk. If in your HORRIFIC HORRIBLE state of being 5 months pregnant need to sit down, tell the ladies at the kiosk that you need to sit down. #2 I CANNOT STAND PEOPLE WHO ACT LIKE PREGNANCY IS GOING TO KILL THEM! It is a CONDITION that YOU put yourself INTO. Either you chose to have unprotected sex and this was an effect of that or you wanted to expand on your family. But whatever SUCK IT UP. If you are so sick at 5 months pregnant then you should not be at the Mall. Go home and put up your feet. And believe me I understand that there are people who have complications. I do. But I DO NOT whine, bitch and moan about it. Deal with it.

Long story short. She had decided to go to BORDERS and go shopping. WHAT THE HELL!!!! So 25 minutes after we get in line we move forward....1 place. I will give props to the kids who were awesome! Good Job Guys!

We were heading into Bath and Body Works when a group of ladies (I am assuming moms, daughters, gramma) cuts us off. One lady taking her arm to the side of Gabe's head. Hard enough for Gabe to yell ouch and grab his (already hurting head). Never once saying sorry or excuse me. So they walked up to the display and I was already heading for that display. Gabe was whimpering that his head hurt. I looked up at the ladies and then back down at Gabe and said, yes sweetheart it is VERY RUDE when someone ELBOWS you in the head and NEVER ONCE says SORRY. They hightailed it out of there. Had Fayeth not been such a turkey because she was hungry and had seen the food court I would have chased them down to EDUCATE them. I wanted to say, "Excuse me STUPID women. I understand that you are out with family having fun. So I am. However, YOU need to be more AWARE of what is going on around you. Do you REALIZE that because you were not watching where you were going and you ELBOWED my son in the head you have caused him more pain. On top of the amount of pain that he lives with on a daily basis. Do you realize that while THIS TIME you elbowed him on the side of his head, that an elbow to the back of his head could kill him. Do you realize that SOME PEOPLE have bone missing from there heads and that your happy little elbows when you are cutting people off could seriously hurt a little boy? Could end his life? Pay the FUCK attention to what you are doing!!!! Or at least have the courtesy to say that you are sorry.

By now we head to the elevator to go down to leave. We get on the Elevator with some very nice and polite young men. The mom that raised these boys did an awesome job. I hope that my son is as nice as these young men were when he is their age. :)

We go to get off the elevator, we cannot move. NONE of us. The lady getting ON the elevator has her stroller pushed right up to the doors. The lady behind hers is shoved right up beside her. Now the Mall is NOT that busy. Also, isn't there stroller etiquette that says you have to have manners with your small single strollers. I can cut the moms with multiple strollers a little slack. They can be pretty hard to maneuver with children and packages. The nice boys said excuse me and she would not move her stroller. Again they said excuse us please, and she still would not move her stroller. I smiled at the boys, leaned from around them and said, "Ma'am, EXCUSE US". She does not move her stroller. I lean around the guys again and said, "Ma'am. EXCUSE US! You MUST move your STROLLER if you want us to get OFF the elevator. We cannot walk AROUND you as you are IN the opening. Please move your stroller." She moved her stroller back 2 inches. The guys were able to get out. I was not. Not with 4 kids. I said again. "I am not sure how the heck you expect people to get off the elevator when you have your stroller in the opening. You will need to move it so my children and get out also. I cannot believe that any of these people in line would cut you off so you could not get into the elevator. Now move your stroller". She moves it back and we get off. There was literally NO WAY that the kids could have gotten out of the elevator. I could have stepped over the stroller but their legs are a little shorter than mine. UGH!

Please explain to me why (some) people with strollers have no courtesy for people without. I have had triple stroller from hell, many double strollers. I try my best not to run people down. If you stop quickly in front of me, I may not be able to stop in time, but I do apologize. My triple stroller is like a Semi truck. It requires additional stopping time. Besides the fact the sucker weighs a ton without kids in it. UGH.

The rest of our trip was nice. Lunch was marvelous. Our server was spectacular and got a little extra for his exceptional service. When the manager asked us how everything went I highly praised him. :)

Hobby Lobby was awesome. That place is the MECCA of crafts and Christmas stuff. By the time we got to Walmart Gabe was hurting. Shunt tubing was poking his liver causing shoulder and chest pain. His legs hurt, his back hurt, and his head hurt. He wanted to ride in the cart. So we put him in the basket. He could not tolerate that. If he leaned forward his shoulders, chest and abdoment hurt. If he leaned back his back hurt. If he walked his legs hurt and hell his head just hurts ALL.THE.TIME. LOL So we quickly finished our trip and headed home. Of course he complained about the tummy/chest/shoulder and back pain in the car because of the carseat and harness, but he made it through it.

Just a little of this and that!

I am probably going to jinx myself if I write this, but dammit I am excited. If we do not go to the hospital before Thanksgiving Day, this will be THE LONGEST STRETCH between hospital visits since June. I am giddy excited with the thought that perhaps we have had our LAST hospitalization for a good long while. I am giddy with excited that perhaps I will not have to go back to Chicago until January 17th to see the neurosurgeon. He has been hospitalized 27 days since June 27th. OH MY GOD! I AM EXCITED!

I will tell you that I am (of course) a little freaked out that Gabe will end up in the hospital for the Holidays. I will be even more devastated to be away from the kids if that happens, but I refuse to think about it.

Must.Vent...

#1) At 3:30am after we have been up for 45 minutes because of such a loud (1 time bang of thunder) DON'T REACH OVER AND GRAB MY ASS!!!! I DON'T LIKE BEING GROPED! KEEP YOUR HANDS TO YOURSELF. It is 3:30am, *I* will be up at 7am with 4 children and I am getting sick. YOU will sleep however long your little heart desires so DAMN YOU, keep your hands to yourself. Besides...DID YOU SHOWER TODAY? STAY AWAY!

#2) Loud Thunder. WHAT THE HELL!!! It was ONE bang of thunder. Loud enough to shake our windows in our house. Loud enough that I thought, WHAT THE HELL IS THAT? Loud enough that both Mr I can't keep my hands to myself at 3:30am and I thought that it could have perhaps been a gas line that blew up.

#3) Fall. I happen to like my nicely wooded lot. I like not being able to see the house that is sort of behind us. Because when you wake up at 3am and cannot go back to sleep thinking someone's house blew up and I look out the back door and your freaking backyard looks like it is illumnated like a freaking football field for a night game it makes me concerned that your house did infact blow up, or atleast have a gas leak. Leaves stay on the damn trees!

#4) Said Neighbor with the Football Stadium lights in their back yard. Can you please atleast make your neighbors aware that you will be installing stadium lights in your back yard so that this fall your neighbors will not worry that your house has blown up. Besides...Your freaking lights illuminate my back yard. Did I tell you how much I like my yard when the leaves are on the tree?

#5) Mr. I cannot keep my hands to myself at 3:30am. Do Not even act all shocked when I very sternly tell you to keep your fucking hands to yourself at 3:30 AM. Before we had kids I did not want sex at 3:30am...and I sure as hell do not want it now. If you have the urge to grab someones ass. GRAB YOUR OWN! :) I rank this experience right up there with your complaints of me sticking my ice cold feet on your inner thigh in the middle of the night. SO.NOT.NICE!

This makes me laugh!

I saw this commercial while watching Grey's Anatomy the other night. Oh dear heavens it makes me laugh out loud! Whenever I need a little pick me up, I watch this silly commercial.

http://youtube.com/watch?v=c0OZvjeMiUM

Questions one will ask a Pharmacist....

Darren has gotten some really wild questions, however he has deemed this the question of the year. He was standing in the pharmacy working when a 20 something married woman came up to him and said she had a question...

Lady: What is it in men's STUFF that makes my throat hurt?
Darren: Excuse me?
Lady: What is it in men's stuff that makes my throat hurt?
Darren: Stuff???
Lady: You know, the STUFF they make?
Darren: ***LONG SILENCE*** * insert the smoke rolling out of his ears from trying to figure out WHAT stuff she is talking about * * insert light bulb going off over his head when he figures out exactly WHAT stuff she is talking about * I am not sure.
Lady: Oh, because it really makes my throat hurt.
Darren: Maybe you should talk to your doctor about this.

Dear Husband,

I would like to remind you that the next time you have a mini "fit" that our son is not wearing his Peyton Manning jersey on "game days", you might want to re-think that. Today since your little tantrum last week, I dug the jersey out of his closet. Why people feel that he should be a COLTS fan just because they are is beyond me. However, he proudly wore his jersey from half-time on. Of course he proudly wore it while he cheered on his current favorite team the PATRIOTS. (Thanks Dr. Frim ;) ) So, today the COLTS lost their FIRST game this season. Today was the FIRST day that Gabe wore his jersey. So, do you think that we should run an experiment and see if Gabe wears his jersey next Sunday, will the COLTS lose again?

WOOHOO GO PATRIOTS!!!!

Your LOVING wife,

Michelle

P.S. Your Jeff Gordon also only came in SEVETH place today and now is in SECOND place in the points standing. Of course, *I* would not be rubbing that is as my guy is in 6th and 13th.

Unhappy...

A few months ago I shared how the Evil Doers (the ones who wrote the nasty email to Miss Daisy stating they they were actually my dead grampa) emailed me very hateful things. Well, it has irritated me that they were actually still hitting my kodak gallery photogallery and looking at pictures of the kids. I opted not to post the halloween pictures on the caringbridge page because of them, well they still hit my Halloween pics. They hunted me down over at Ivillage. The only place that I posted a link to my pics. UGH!!! I think that my hands are pretty tied at the moment. But it is REALLY REALLY REALLY creepy! Sick Freaks!

Now I am not comfortable posting at IV anymore. UGH! UGH! I really don't like them.

Blogging...

I was telling a friend the other day that I had lost my blogging mo-jo. I told her that when something happened in my life that I found humor in, a lot of time it was chiari related. When I shared the story people, not know what to say, would send me hugs.

I am in the land of Chiari. It will forever be a part of my life and that is okay. There are so many things that make me want to hit my head against a brick wall, but I don't. Because after a while you just have to laugh about it. Maybe it is my sarcastic nature, but whatever it is I want to share it. I want you, my friends, to know that it is okay to laugh about it. What else is one to do? Cry?! I am done with that.

While yes this journey sucks and it has been a long emotionally draining road, I have learned SO MUCH and met SO MANY awesome people. There have been people that I have been able to reach out and help because of our experiences.

We did 5K

We signed up with Team Cure Chi ari to walk in a 5K Run/Walk/Kids Dash for University of Chicago Co mer Children's Hospital. We walked with another Chiari/pseudo tumor cerebri family the Johnson's. Rachel is awesome and has been a wonderful source of knowledge about this entire shunt process. (Her husband Kurt is awesome as well) Her boys are just joys! They are SO.SWEET!!!!

We arrived at the U of C Quad yesterday and got our numbers and got in place. My mom went with us as well. As of right now (and it is not up to date) our team (Cure Chiari) has raised (995.00) WOOHOO US! The walk was beautiful. We walked out of the Quad and down 57th to Lake shore Drive. We walked the paths by the lake and it was just a gorgeous day.

Lindsay ran ALL of the 5K with the exception of about 10 foot. She walked 5 ft with Gabe and then decided she needed to run/jog. And she walked across the finish line with me. *I* was pushing a stroller stuffed to the gills. *I* was not about to run across the finish line. Gabe was able to walk part of the 5K and even got to walk over the finish line. Hannah ran about 2 miles of the 5K. Then her feet started tingling and she needed to sit. (Thanks Chiari)

Lindsay is hell bent that she WILL be running the 5k competitively next year. So I guess I best hit my diet/exercise regime a little more aggressively. Hannah is seriously thinking about running it also. I would need to find another person to run with us incase Hannah's feet started giving her grief. I think I might ask my cousin Abby. She has run the Chicago Marathon (and completed it) 4 times. Including this year when it was so nasty hot. The girls LOVE running. I hope that something in me changes and I find that I love it too since I am going to be obviously be doing it alot for the next year. LOL

Here is a link to our pictures.

Some Pictures....

The allergic reaction. This was 7:30pm and he had only been out of surgery for 2.5 hours. During this time he was also having chest pain.

Labeled Picture

Another labeled picture

Shunt Boy is home...

Only 6 days at the hospital this time around. Yeah us! We were very happy with the care that we yet again received at Comer. Gabe is comfortable for the most part. From time to time he will gasp out and tell us he has pain. That pain is mainly from the shunt tubing. He has to get use to the feeling of the tubing, reservoir and valve under his skin and snaked into his abdomen. It was really cool looking at his w-ray and not only seeing his bowels but this tubing just floating around in there.

They opted to go with the soft tubing as it is a little more pliable and Frim felt that Gabe is very sensitive that if they used the barium coated tubing which is a little less pliable that he would have more issues with the tubing poking him. If we heard correctly the tubing they used with Gabe breaks a little more easily than the barium, but I would much rather take my chances with the soft tubing than the more firm tubing.

Gabe's shunt only drains when he lies down. So he will still get headaches (when his pressure goes up), however he has to learn when that happens that he needs to lie down and drain. Draining time just depends. It will take time for him to learn, but you can visibly see s difference in him when his pressure is up and he needs to lie down. Also his speech is a good indicator of when his pressure is up. So, it will just be learning on his part.

We were able to get a programmer. I was a little scared of this thing but Amanda (NP) showed me how to use it and it is not as scary as I once thought. :) Actually it is wicked cool. IT is nice to know that if his shunt setting is not appropriate that we can fix it by reprogramming. Where in the past you had to go in and surgically change the valves.

Gabe developed modesty sometimes between the time he went into the OR and when he arrived in the PACU (Recovery room). Dr. Steve went to lift the sheet on his left side to show us where they placed the reservoir and valve Gabe's eyes flew open and he said, "Don't look at my penis!" We started laughing and Dr Steve told Gabe that we were not going to look at his penis, just his shunt. Gabe was okay with that.

Gabe was so cute in PACU. We were only there for a very short period of time before he got to go to his room. However while there Gabe asked us what time it was. We told him 6pm. He started crying and we asked why. He said, "I missed Breakfast AND Lunch today and I am just starving!" When we arrived in his room, we grabbed the room service menu and asked ordered his meal before they were able to get him off the gurney. :) He was a happy boy. Food service put a rush on his meal because they could hear him crying in the background that he was starving and how we starved him all day long. When I explained to the lady what had happened and how his surgery was delayed due to complications in the surgery before us, she was very sweet and rushed his meal.

Our Child Life Specialist at Comer are awesome. Miss Tracy (Gabe's favorite) works in OR. She actually came down every day (but 1) to visit Gabe. She even played BINGO with him 1 day. :) Our other favorite Miss Ann came in to see him every day but 1 also. They are so awesome. I am so spoiled by going to a hospital with child life. A volunteer came in every day to ask me if I needed a break and that they would sit and play with him. We had no further mishaps with elevating his bed, but that might have to due with him having signs posted ON his door and ABOVE his bed.

F.R.U.S.T.R.A.T.E.D.

13 weeks 2 days ago (3 months 1 day ago)....Chiari Decompression Surgery-5 days hospital

10 weeks 2 days ago....Chemical Meningitis-3 days hospital

8 weeks ago today....Diagnosed with Papilledema

7 weeks ago today....Lumbar Puncture diagnosed with Pseudo Tumor Cerebri

4 weeks 3 days ago (1 months ago) Lumbar Drain Trial-8 days hospital

So Dammit....When Gabe gets his shunt placed. I refuse for there to be ANY complications Pre/post surgery, during recovery, ever. His shunt is going to work. He is not going to LEAK or get the "M" word. His shunt is not going to CLOG, BREAK, or JUST NOT WORK.

I REFUSE TO ALLOW ANYTHING MORE TO HAPPEN. I AM DONE...DO YOU HEAR ME SO DONE!!!! 5 year olds should not be on methadone and tylenol #3 round the clock. They should not be able to tell you how to put in an IV or do a Spinal tap or what a lumbar drain is.
DEEP BREATH!

Okay. I am better. I just needed to VENT. Well it was either that or open my cabinent and start throwing stuff, but since my pfaltzgraff pattern is retired and I could throw those damn PURDUE glasses but then I would have to sweep the floors and pay for co pays to the peds when the kids got little shards of glass that get into the hardwood floors in their feet, I will pass on that. So, I needed to vent. :)

There are just so many funny things that have happened the last week or 2. But when I sit down to blog about them, I cannot remember them. Then I will go to lie down in bed at night and I will thinking of them. I need to keep a note book next to my bed.

Aunt Becca came over last Thursday so that we could bake goodies for the Ronald McDonald House. We made 2 dozen cupcakes, 4 dozen cookies, and 4 dozen brownie bites. The children had a wonderful time helping and baking. We only had 1 little mishap and that would be the 2nd degree burn Hannah sustained to her left index finger. Because of the meds she is on she has a delayed reaction. So she kept her finger on a hot baking sheet longer than she should.



However Aunt Becca was discussing how your left hand makes an L and that his how you know that your left hand is actually your left hand. All of a sudden Gabe turns his right hand palm up and says, "Look Aunt Becca my right hand is now my left!". Then he roared. He thought he was hysterical. Becca and I did too so we also started laughing hysterically. LOL

Here is a link for the rest of the Cookie Pictures.


Also, I will be walking a 5K for Comer Children's hospital. You can read about it here. We are hoping for Gabe to be able to participate by riding in the wagon or the wheelchair. Whichever will work.

Long time no blog

I have had a very rough time since Gabe's decompression surgery. I finally figured out that most of it had to do with me keeping my keepings bottled up. I don't want to post it over at caringbridge as that is suppose to be about the kids and not me. But I have been afraid to blog it here for fear that the EVIL ones will read it and send me more nasty emails about how I wanted this. But I need to blog this for my own good. If you do not like it. Then don't read it.

Emotionally I have been through the ringer. When Gabe had chemical meningitis and they told me that his CSF pressure was only 11 and he was so symptomatic of being high I lost it. I cried and cried and cried. I never cry. Tests, surgeries ect are matter of fact. To be completely honest with you the whiny parents in the waiting room drives me nuts. For the love of God people there are OTHER PEOPLES KIDS ones who are still WAITING to go back for their surgeries sitting out here. You are freaking them out. Suck it up. DEAL ALREADY! I felt like I was becoming a whiny parent.

I have continued to cry. Papilledema...I cried....Elevated pressure....I cried. I cry because he has pain. I cry because I am exhausted because rarely does he sleep. I cry because this just pisses me off and I can no longer even verbalize my frustrating.

The day that took the topper was when Gabe had his drain trial. That was his 17th time under general anesthesia. The dark thoughts drift into your head. Your kid goes under general one time....No biggie the odds are in your favor. Your kid goes under multiple times, you start to worry about when the odds will not be in your favor.

I got weepy when Amanda came in to get for surgery. I pulled myself together. We walked to the double red lines. That is such a long walk for such a short distance. He gave hugs and kisses and I love you's. Amanda had stopped at the desk to page the NS and I just walked passed her as she told me it would be okay. I must have freaked her out a bit as when I was trying to open the door to go to the waiting room (and then continue my flea to outside) I could not get the door open and she came back and grabbed my hands as I was trying to get the door opened and told me that I did not have to go out there yet. I just lost it. I composed myself the best that I could and we walked into the waiting room. Looking at all those parents who were there for their kids to get tubes in their ears or circumcisions I wanted to scream at them all. I wanted to run away. And so I did. I told Darren that I needed to go outside and get some fresh air. Darren knows I never leave until they call to tell me that surgery started and he was a little concerned. He talked to the receptionist and I headed to the elevators.

Down we went. I text messaged people to tell them that he was taken back for surgery. I talked to a lady from my moms work to give my mom the message and I hung up. We walked back into the lobby and I heard a Hey Guys! I did not at first recognize the person and it was Sheri Dr. Fr ims nurse. I said hi and just got all weepy again. Darren wanted to go and eat but I was not hungry and he did not want to leave me alone. I told him to go but if I saw or smelled food I would vomit.

It was just over an hour for his surgery and they called us back. We walked back there and saw the drain collection device and I wanted to run like hell. Run as far away as I can. I did not and we stayed in the recovery until they got his room ready.

It was a long 8 days in the hospital. It has been long weeks since his procedure. He now knows what it is like to have pain free days. And well he wants it back. He is none to happy that he has to wait. :(

I still have my days. It makes me so mad that he has to suffer. Let me try to explain here what the days are like when I try to describe them.

"Good Days"---Days when his pain will respond to medications and come from a 5 (on a 0-5 scale) to a 4. These are also the days when he can actually act like a little boy. The days he can run and play outside without crying within 5 minutes that he hurts and wants to go inside.

"Normal Days"---Days when his pain stays a 5. The meds may help his pain come from an intense 5 to a mild 5. And yes these are descriptions Gabe gives. These days our huge activity from him is playing on the computer. Maybe playing in the playroom for a few minutes.

"Bad Days"---Days when the meds dont touch the pain. Days when his biggest activity is getting off the couch to go to the bathroom or walk upstairs for meals. These days result in a lot of movie time. Lots of him sucking on his fingers.

"Horrid Days"---Days when he is in so much pain he screams at us. Pain meds dont work. He yells, screams, says mean things and does mean things. He is just pushing out of control. He hurts and does not understand why he has to hurt and others do not. These are the days he gets very frustrated and usually cries about wanting to be normal.

"Status Quo" means that we are having one of the 4 before mentioned days. Any of these days and vary over the course of a day and often do.

Well my friends. AS much as I would love to blog more. I must sleep. Speech therapy tomorrow for the boy....Great!

A little of everything...

Fayeth has shown a short lived interest in potty training at 19 months and again from time to time since then. Back a few weeks ago she wore panties and I chased her around with the steam cleaner all day. After a couple days of that she wanted diapers back. However, we recently started to notice that Fayeth would get very upset if her diaper leaked. Hello Baby Girl, I cannot help it that you held your bladder for that long then flooded the diaper. You were the one telling me "NOOOOOO" when I checked you diaper and it was dry. Then she started wigging out if she peed IN her diaper. At all. Just 1 drop sent her into a tissy!

I have always had children who just wake up one morning and BAM they are potty trained. Lindsay would barely give us any notice to get to the bathroom. I am not sure how many times Mom and I RAN through Walmart to get her to the bathroom in time, but hey we made it all but once. So, Fayeth is giving me a bit more of a challenge that I am use to. I am no where near thrilled that she choses THIS time to do it. I am LEAVING in 4 days for over a week. UGH! The stress you are causing me child. ;)

We officially had our first sucessful trip out today in panties. All the way to the peds office and back. We left at 1pm and got home at 315pm. However this evening we also had our first accident out in public. We were at the local pharmacy and the damn pharmacy staff was taking SO LONG that little one had an accident. I was so wrapped up in the older 3 that I missed her telling me she had to go potty. :( My fault little one. But oh well. You peed on their floor. NOT MINE. =)

The kids have developed this fascination with the skeletal system. At the peds office there was a book about the skeletal system and our Ped told us to take it with us to the hospital and Gabe could read about it there too. They are pretty good at locating their humerus, radius, ulna, tibia, fibula and femur. They are still getting the phalanges and metacarpals not quiet perfect. They want to call the last set of phalanges metacarpals.

Well, I think that I am off to bed. We have a full day tomorrow. Some school, outside time if I can get Gabe's pain to cooperate, pedicures with the girls, cleaning and packing for the girls. =)

People never cease to shock me...

Here is a conversation from today:

Person X: Are you still planning on homeschooling?

Me: Yes

Person X: Even with Gabe's issues

Me: More the reason to do so

Person X: WHY would you WANT to do THAT?

OH MY GOD!!!!!

Why is it that people feel they have the right to come up to home schoolers and ask "WHY would you WANT to do THAT?" I do not go up to people who as sending their children to Preschool, Public School, Private School or Day Care, "WHY would you WANT to do THAT?"

I am also the type of HOME SCHOOLER that is NICE. I don't share my beliefs on the school system with people (unless they specifically ask) and then I usually will sugar coat it. I just keep my beliefs to myself. But Dammit it already. DO NOT ask me again why I home school. Because if you do, you are very likely going to very clearly get told WHY I do not believe that it is proper to send MY children into an setting like school.

I am sick...

The Evil Ones are reading my caringbridge page. I know this because they signed into my kodakgallery to see pics of the kids. I am sick. This nasty sick women accuses me of horrible things. Tells me I am not family and continues to read about my children.

This is 1 of the emails she sent. Obviously she does not know about a lovely thing called PUNCTUATION. Her name is "Cindy".

"as far as I am consern your not even family I have put up with enought shit from your family going back to your father and was told by your grandparents to keep my mouth shut but if you want dirt I will find your blog and really show the real side of you and your family so its in your conor I will make sure it isn't on any of our computers and as far as our family goes just to let you know now if something happens to Mike I will not call you or your mom Aunt Z yes but you guys never and he isn't doing that great either biut like you guys care I have bettere things to do than check on your bull shit on here Cindy lose our number and mail I have delete all of yours and your have been off our yahoo list for a long time after you said we done that to miss daisy which I never did but you seem to think I did can't speak for Mike but your the one I believe in the wrong after all he is family opps not really because you were never a MCG*** so sorry to think of you as family but a sick person who wants sick kids "

What I think makes the family laugh is that she would say this about me. When my cousin Kim, HER DAUGHTER, was 3 maybe 4 she would come up to you and say, "HI! I am Kimmy McG*** and I am retarded!" Well where exactly does a 3 or 4 year old learn that. FROM HER PARENTS. Yes, my cousin is special needs. But I really hate the word retarded.

If I had not networked with many other parents of Chiarians then I would close up my site and move it. Or even password protect it. It just sickens me that she is still reading my caring bridge page.

GO AWAY EVIL DOER!

It is no hidden fact that we are homeschooling. For us it is just the best fit for our family. So, the other day while I was scouring over curriculums I felt the need to test the waters and see where the kids stood math wise. I grabbed the addition flash cards to see what the kids knew. Gabe went first and did awesome. He is a bit rusty, but he is really starting to regain what he lost pre-op. Lindsay was in a bad mood and had an attitude so she went to her room to compose herself and check her attitude.

When she came back later she told me that she would much rather do "Language Arts". I asked her if she knew what that was and of course she did not. Since we believe in child led learning I started introducing them to nouns, verbs and adjectives. Hannah had wandered off to do her own thing but was still in ear shot of what we were talking about.

I held up a red and blue toothbrush and asked, "What is a toothbrush?" Lindsay immediately replied, "A THING so it is a NOUN!" I said you are correct. Then I hear this voice from the living room (we were in the kitchen) say, "But if you are talking about the red and blue those are adjectives. They DESCRIBE!" I could not help but laugh. Yes Miss Hannah you are so correct those are adjectives.

I cannot believe that my then 3 year old picked up adjectives so quickly. Those are her favorite questions to answer. She can even pick them out in a simple sentence. :)

I had this beautiful post for Hannah...

but I think right now that will have to wait. Just over a month ago, I got an email from my "aunt" that said that I was "a sick person who wanted sick kids". Also "be aware he (my uncle) may even write on your blog for other to see right thur you crying for prays for your kids but not even going to church you stir this up not me."

I opted to move my blog. Code my kids names, all because I did not want these sick individuals reading what was going on with my children. And YES these are the people that wrote the nasty letters to Miss Daisy.

In the last month I have really pondered the things that were said about me. And just for the record I want to set a few things straight.

#1 "be aware he (my uncle) may even write on your blog for other to see right thur you crying for prays for your kids but not even going to church you stir this up not me." I do not believe at all that I have to attend church to have a relationship with the Lord. Yes, I have ASKED for prayers, but I have never cried for them.

#2 "a sick person who wanted sick kids" I actually had a few "choice words" in reply to this but I will take the moral high road. Not something that these people are familiar with.


The last 5 weeks and 4 days has been a very hard journey for us. Anytime you put your child under general anesthesia you cannot help but wonder if this will be the last time you will see your child. The emotionally roller coaster called recovery from neurosurgery. Being separated from the other kids, the decline and pain that Gabe had, chemical meningitis, pseudomeningocele, CSF leak, steroids, increase in other meds, increase in pain....and the list goes ON and On. If anyone thinks that I would want my kids to go through this...you are C.R.A.Z.Y!

There is so much more I need to say, that I want to say but if I do I will get flamed. So I will keep my mouth shut.

Hey Mom! Mine is prettier than yours! ;)

My mom and I have the same 2 tiered planter. I set mine up differently than hers. She prefers the way I have it set up but since her flowers were already in hers she did not think she should set hers up like mine.

This morning I walked out onto my back deck to look at that damn pool, I saw this.
I love my back deck. All my favorite flowers are in planters up there. It is really pretty and calm. (plus having children quietly sleeping helps)

The "asteroid" illuminates at night.

Now if we want to talk pools....HERS is currently prettier than mine. As is her yard. :)

MIA...

I need to take some time away. This week is going to be hectic and to top it off I just really feel like a lousy friend. I feel like a life sucker. I feel that I am sucking away all the happiness from everyone around me. I am taking more than I am giving in friendship now. I am taking more than I have to even give out. After the kids I have nothing else to give.

The arrival of the Tooth Fairy....

Monday morning I woke up to Linds getting right in my face and screaming, "THE TOOTH FAIRY CAME!!!! SHE LEFT ME MONEY!!!!" I asked, "How Much?" She said, "I don't know I left it in the pillow". I told her to go and look.

As I climbed out of bed and attempted to pee in privacy Hann ah came running into the bathroom. "Mommy! Mommy! I am no longer afraid of the Tooth Fairy....I SAW HER!!!!" Right about now I nearly crapped my pants. I know I had to have the deer in headlights look. I thought to myself that I could find SOME reason to say I was in their bathroom.
Me: YOU DID???
Hannah: Yes!
Me: What did she look like?
Hannah: She is pink and sparkly and flies!!!!
Me: * insert deep sigh of relief *
Hannah: Mommy she is so beautiful.
Me: thinking to myself, This Tooth Fairy thing sucks more than Santa Claus.

Linds comes running into the bathroom as I am washing my hands. I have a HAMILTON!!! Mommy a HAMILTON!!!! Woohoo!!!!

Here are a few pictures

Here is the tooth fairy pillow that I had to throw together at the last minute. Gabe has specific directions to tell me as soon as he has a loose tooth let me know so I can complete his.

To which the therapist can blame the DADDY!

Location: Family room Lower Level

People Involved: Dar ren, Linds ay, and the 3 others were watching TV.

Lind say walks up to Dar ren (who is pre occupied by his computer) and states, "Here Daddy. I lost a tooth!"

Dar ren looks at her and sees a string in her hand and starts screaming, "Did you pull out your tooth?"

Lind say: FREAKS THE HELL OUT FROM HER FATHER SCREAMING AT HER and starts screaming herself!

I am upstairs in the living room and I yell down, "What happened?"

Dar ren: Lindsay yanked out her tooth with a string!
Lind say: * SCREAMING *
Me: Come up here. By this point I have decided that she must have knocked her tooth out and now she is bleeding because she is screaming like someone is stabbing her. I meet then in the foyer.
Me: Did she get it all out?
Dar ren: Dunno
I note that she is not bleeding so that is good. I said, "Where is it?" Dar ren hands me the tooth. Lind say is screaming. Darren has a look of shear HORROR on his face. To difuse the situation I start excitedly yelling, "YOU LOST YOUR FIRST TOOTH!!! THE TOOTH FAIRY COMES TONIGHT!!! YEAH SWEETIE!!!! YOU LOST YOU FIRST TOOTH!!!!"

The screaming ceases and cheering from the Toothless wonder starts. Everyone is excited. The Daddy is looking pale. We go upstairs to check and make sure that the entire tooth is out. It appears so. :) I note that her tooth next to it is loose also.

Me: "Linds did you pull your tooth out with a string?"
Lindsa: No mommy! It was loose!
So we discuss how the tooth goes into the keepsake jar and that the tooth fairy will leave her money on her special pillow.

I go downstairs where the Father has migrated to.
Me: "What the hell is your problem? This was her FIRST TOOTH and all you can do is SCREAM at her like she did something wrong?!"
Him: "Well, I though that she pulled it out with a string?"
Me: "SO WHAT!!!! Who the HELL CARES HOW it came out. It is out!!! It was her FIRST TOOTH. BIG ASS MILESTONE and all YOU can do is YELL AT HER? Do you realize this is going to be the moment she remembers for the rest of her life. YOU YELLING AT HER!!! SHe went to YOU first. NOT ME!!! YOU and YOU YELLED AT HER! At least it was YOU that scarred her. Next time that one of the kids looses their first tooth. Do you think just maybe that you could NOT yell at them? Her therapist will love you for this one!"
Darren: "It just freaked me the hell out!!! It was like WHAT THE HELL???!!!!"

I swear the man reacts 1 of 2 ways. 1) he OVER reacts in a negative way or 2) he shuts down and nearly passes out.

So now we have a little girl. Missing 1 tooth, 1 loose and a son who is PISSED that his twin sister lost a tooth AND an almost 4 year old who is afraid to go to sleep because the tooth fairy might get her!

Never a DULL MOMENT in our House! LOL

After reading this entry to Dar ren I asked him if he wanted me to add anything in his defense. He replied..."No!" With a HUGE heavy sigh. Dar ren was completely aware that I would be blogging this as while it was happening I kept saying, "You reaction is SOOOOOOOO blogworthy!"

Quiz

Click HERE to take my quiz. I am going to be putting together an information sheet re: chiari for our local hospital to have. AFter Gabe's last trip to the ER where the Doc knew nothing I need to do something. I have to know that I can trust our ER if I should have to go there. Also, since I have pretty well bashed the crap care that we have received at the ER, I would like to send this info sheet along with my survey back to the hospital. So if you can PLEASE help me I would appreciate it.

Also, I was asked if I had a pic of Gabe's herniation. I was able to get one of his pre op MRI. I labeled it for you:
Where it says "Base of Skull" on the right hand side. Should be where his cerebellar tonsils end. In another frame of the MRI in the flow studies you can tell that Gabe has obstructed flow from time to time.

Scent....

Since Lynn tagged everyone who reads her blog. She wants us to tell her about a Scent and what memory it evokes....

My Scent would be gauze.

When ever I see gauze I can smell it. It reminds me of Gabe's first surgery. Gabe's Head was wrapped up in a turban. We called him our little SWAMI. To this day I still can smell gauze on Gabe's head. Here is a Picture of our little sawmi!

Recital Pictures

These are our professional recital pictures. We are very pleased with how they turned out. The group shot was a little cheesy looking, however after 3.5 hours there we will call it success. :)

Ga be Ballet

Ga be-Tap

Lin dsay- Ballet

Lind say-Tap

Han nah Pre-Ballet

Dear Gabe,

In years when you find this entry I want you to read it and know that while it is filled with sarcasm, I love you so much. You are such a brave young man. There is only 1 thing in the hospital or Drs office that makes you weak. It would not be the needles or shots or even surgery. Your kryptonite...TAPE! Child, I HAVE NEVER HEARD A CHILD WHO SCREAMS NOOOOOOOOOOO LIKE YOU SO WHEN THEY ARE REMOVING TAPE! One of these days you are going to learn that ripping it off more quickly makes the pain go away faster. You are such a goob. "Take it off slowly, gently....ooOOOOUUUUCCCCCHHHHH!!!!!" You do not even flinch when you get shots or an IV, but TAPE!

Sweetheart, have you not learned yet that even if a medicine tastes nasty I will hunt you down to take it. TWICE A DAY. You need to find a better place to hide. I KNOW that you pull the trundle bed out and pull it in behind you and that you hide there. Oh, btw if you are going to hide in the secret room off your playroom you need to learn to not turn on the light in either the playroom or the secret room. It is a dead give away. Yes people he is back on the Diamox. The pills that have to be crushed and added to a nasty syrup to make it the proper dosage for a child. Basically it tastes like chalk in aspartame. Or dog butt if you ask Ga be. I do not know HOW he knows it tastes like Dog butt and I do not want to know. LOL

I laugh at you when we are out and people asked you about your "boo-boo". Yesterday we were at a store and some lady asked you, "Were you one of the little monkeys jumping on the bed. You know the ones that fell off and bumped their heads. Did you need many stitches?" You loked at her, flashed her your dimple smile and said, "No ma'am. I had brain surgery." Just as non chalant had you said, "I would like a chocolate ice cream cone". She had a mortified look on her face and asked me if it was "The C word". I prompted you by saying, "Sweetie, tell her what you had done. What type of brain surgery." You were so cute, you again smiled your dimple smile and said, "Ma'am, I am too smart. My brain is too big for my head. My brain was squeezing out my formen magnent (foramen magnum). So my dr opened up my head, took out part of my skull and 1st vertebra. He opened the lining of my brain. It is called the dura. He added a graft, that is like a patch, to make the dura bigger. He separated my tonsils and put them back where they belonged. Did you know that you have tonsils in your brain? And he glued me shut. I don't have any stitches or staples. I have Chi ari Malf ormation." We then of course got the how old are you ect.

You were so cute in the hospital. One of the fellows during your neuro exam would ask you every morning what you wanted to be when you grew up. You replied, "I want to be a dr like Dr Fr im. I am going to find the cure for chi ari. I am going to be a soccer coach, daddy and a male ballet dancer." Every morning they would chuckle and finish their exam. The last day the fellow came in and asked you that question. You answered like you had every day prior. Then you said, "Are you asking me because you want me to say I want to be a dr just like you? I will if you want me to!" LOL Thursday we got to the Clinic early (imagine that) and we went to the cafeteria to get something to drink. You saw the fellow and gave him your dimple smile. He came over and you chatted a bit. We headed out for clinic and waited for a bit. When they called us back the fellow with his entourage of residents and medical students came in. He started the neuro exam and when he said, "Hey buddy what do you want to be when you grow up?" You smiled giggled and said, "When I grow up I want to be a dr JUST LIKE YOU! I am going to find the cure for chi ari. I am going to be a soccer coach, daddy and ballet dancer. Now will you stop asking me that?" Gramma had no clue what all that was about. I was laughing hysterically. The fellow was in stitches. He explained that he only asked you every day as part of your neuro exam to see how your brain was doing. You said, "OH I thought I was making you sad by saying I wanted to be a Dr just like Dr Fr im. Because you know. That is what I really want. To be a dr like him. I like wearing ties!".

You my dear little boy, I love.

XOXOXO
Mommy

Wednesday we arrived at surgery waiting at 7:10am. He told Gramma bye and gramma got all teary-eyed. By 7:11am Darren, Gabe and I were in our holding room. We met with the med students, residents, fellows and most attendings. The child like special Tracy will ALWAYS have a special place in my heart. She was awesome and I thank God for her being there that day. :) Gabe remembered her from the 900 (yes I know a SLIGHT exaggeration) times he has already been there. She got him a new Gabe. Please welcome Gabe the 4th to our family! He picked the scent to put in his mask (rootbeer) and all was good. He asked the Drs questions and was just his normal precious self. Gabe then climbed up on the chair in the room and asked us, "When is Lindsay going to be here?" Lindsay opted not to go the day of surgery. We told him that Lindsay was not up to coming and waiting all day long. He was crushed. The resident saw the look on his face and I said, my mom is in the waiting room can she come back. They said yes and Darren went to get her. He was SOOOO happy to have Gramma. The night before Gabe asked me if I was scared. I told him the truth that yes I was scared. HE asked why and I did leave out the stuff I did not think that he needed to hear. I told him, "Buddy, I am scared that you will hurt badly after surgery. And I am sad for when I have to stop and I can go no further with you to the OR." He asked me that night not to cry and I promised him that I would not. I have never cried in front of him.

So they tell us it is time (8:35am). So we start The Walk to the double red lines. We arrive at the double red lines and we give our hugs and kisses and told him that we would see him soon. My mom again got all teary eyed. Tracy, our sweet angel, told Gabe that she would stay with him until they put him under and he was very excited about that. They walked through those doors and they started to close. Gabe stopped and looked back and waved as the doors closed. My heart stopped beating. The dark thought of that could be the last time I saw him popped into my head and I squashed it as quickly as possible. But I did not cry. I wanted to. I wanted to scream, shout, curse and throw things....But I did not. Dammit....WHY GABE! WHY MY KID! Why can't it be someone else's kid. Someone who takes children for granted? WHY MINE! I quickly got my head out of my ass and we headed off to the waiting room.

9:10am Tracy comes and tells us that the attending anesthesiologist was held up in another room and that is what was the delay. She told us that Gabe was a riot and really had a knack for numbers. When the anesthesiology resident asked Gabe if he knew what surgery he was going to have, Gabe told him...."Yeah, I need a little work done on my head. You know, my brain is too big for my head and my brain is squeezing out the 'formen magnent' (foramen magnum) and they are going to make that area bigger. You know the Dr told me that this happened because I am so smart. You know...I AM smart!" They then had him doing adding and subtracting and had the room in stitches. Tracy told me that he was under and they were starting the IVs and arterial lines.

10am no call that surgery started. Darren heads down stairs.

10:10am mom and I decided to head down stairs. As we are heading to the elevators the anesthesiology resident came out of the OR. I asked him how Gabe was doing and he again told the story about Gabe waiting in the OR. HE was so impressed by his maturity, understanding of what was going on with him and his lack of fear while sitting in the OR for half an hour. Dr Black said that he got a coffee break and that they were positioning him on the table face down.

10:15am ate breakfast went outside. came inside went up to wait. I tried to read but I could not focus on the words. I played a few games of soduku. 12pm I am getting a little agitated. I had not heard anything and I am then starting to worry. Around this time they called to tell me that things were going well. I asked about how much longer and the nurse asked. I could hear Dr Frim tell them, "Tell her that I am opening the brain now." So not something that I needed to hear at that time. I nice 1.5 or 2 hours would have been just fine for me. :)

1:20ish I got word that they were closing and would be taking him to PICU in 30-45 minutes.

2PM Dr Frim was out and we talked about his surgery. It was "boring" and we were THRILLED to hear that. He explained that when he opened the skull his brain "jumped" out a bit and looked like a very happy healthy brain. He did say that when he opened the dura it was poorly attached to whatever structure it was suppose to be connected to and it popped off causing a pocket of CSF to form. So he put in a drain. :) Also that his cerebellar tonsils were pushed together and smooshed. He separated them and now all should be good. :)

2:15pm we arrived at the PICU. We told the nurses that we were there to see our Gabe and she said 5 minutes.

2:30pm I am now getting a bit irritated. I sent Darren to find out what the hell was going on and when we walked into the hall a few people had went into Gabe room and shut the door. He came back to tell me that.

2:45pm I am stressing. 5 minutes I was told and now it has been 30 minutes. I am very irritated. Very worried. Are they not able to get him stablized? Is he going to code and I am going to hear them call a code blue to his room? I am now nearly frantic. This was awful. The nasty dark thoughts that were coming into my head were horrible.

3pm I am now LIVID with worry and fear. I inform Darren to go out there NOW and tell them that I want permission to go into my sons room NOW and that I DO NOT CARE what they think. Darren was walking out of the room when the nurse came to get us. He was so grateful. LOL

3:02pm. We walk into Gabe's room. The first thing that we see are his "finger stumps" hanging over the arm board. It was too cute. He was on his back with his arms bent at the elbows and his hands in the air. It looked like a dog playing "dead". I went to him and spoke to him. He opened his eyes and was groggy but did talk to us. He said, "Hi Mommy! How am I suppose to eat with these on? I guess that I am going to have to use my 'finger stumps'!" He was feeling very little pain. Our nurse told us that the anesthesiologist was a huge advocate in pain management and did not want Gabe (who he had come to love) hurt post op so he gave him quite the healthy dose of morphine and that for the hour after he came to the room someone had to wake him every few minutes to remind him to breath. (Morphine depresses your respiration rate) She said that they could have given him Narcan but they did not want him to have all the meds pushed out of his system so they were just aggressive with keeping him breathing. (This was also NOT the nurse who told me 5 minutes)

4pm Mom and I go downstairs to get lunch/dinner and make a few calls. We were outside and I was talking to my sister on the phone and there was a guy who walked up and heard what I was saying and he said... "Ah! Dr Frim's patient! Was he the little boy hit by the car?" My mom went to explain that Gabe had chiari and the guy says, oh his scar will look like this, and turned around to show us his scar. We then discussed how out of 8 people in his family 6 have chiari and have been decompressed. 5 have had awesome results. He is the only one who developed PTC and currently has to have his shunt replaced as it is broken. We talked for a while and said that based on my and my mom's symptoms that we needed to get scanned since there are only 17 families with 3 generations of Chiari.

4:30pm We arrived back at Gabe's room. Dr Frim and Judy (ANP) were there. We again discussed the surgery, plan of action ect.

5PM Gabe is now asking to go to the playroom. I just don't think so buddy. He asked for dinner and we order him soup and teddy grahams and lemonade. 5:30 he eats dinner, asks for pain meds and is talking to us and watching TV.

6:17pm Gabe poses for a picture:


8pm. Gramma leaves. He is resting comfortably. 9pm he is again complaining that he is hungry. The nurse gives him a "box lunch". He ate 1/4 of the sandwich, 3/4 of the apple.

9:27pm Another Picture:


10pm. The vomiting began. Wow! the force that it came out of him. YIKES! Now when he vomits he screams. An ear piercing scream that shakes the bottom of your soul.

10pm- Thursday 7am. Vomiting, screaming, pain meds. Wash...Rinse.....Repeat... Around Thursday 6:30am I literally thought...OMG!!! what the HOLY HELL have I done to my child. I was warned that it would be like this, but I still was not prepared. They already had Gabe on Zofran for the vomiting/nausea but it was not completely getting the job done.

6/28 7:30am. The residents and Judy (ANP) arrive for rounds. Judy and I talk. She very compassionately reminds me that this is normal and that the goal for the day is pain management and to try and control the vomiting. She said she is starting pepcid IV and increasing Gabe's zofran for the nausea and vomiting. If he continued she would start reglan. Also we were moving to the regular unit :):):)

10:30am. Gabe's pain is breaking through every 2 hours. His order is for pain meds as needed every 3-4 hours. Our AWESOME nurses got the order switched to every 2. Gabe would vomit/dry heave....scream from pain....vomit some more.... It was very hard. I was counting down the hours until the next morning. The nurse came in and I told her what Judy said. She called and we started the reglan by noon. They also changed his morphine to delaudid to see if the morphine is causing increased nausea.

12:45pm Gabe has sediment in his urine. The nurse collects a urine specimen. 1pm Gabe has refused to eat or drink at all today. Constant vomiting will do that to you. He was resting comfortably and I decide to go ahead and give him a bed bath and lotion him down. After his bed bath we up the head of his bed up higher and he decided he wanted to go to the chair. We discontinued his catheter. Gabe just before catheter removed:>


1:30pmWe got him into the chair. We were informed that there were no beds available to move to. :(


2:30pm. Has peed twice :) which is always a concern when you take out the catheter. They removed his arterial line. 1 IV down, 2 to go. 4pm We ordered dinner. He ate in the chair then asked to go to bed as he was "REALLY REALLY REALLY hurting". The vomiting had ceased around 1pm.

7pm. Has not peed for a while. Feels like he needs to go. Pushing fluids. Dilaudid working well. He is comfortable. ***I must add...Gabe's pain was not in the incision. It was in the front of his head. His forehead. sometimes in the back but 99% in the forehead***

10pm. Still no pee. Nurse is starting to get concerned. Great everyone loves urinary retention.


Friday Midnight. I get ready for bed. Go down to the bathroom. Come back. Gabe had woke up and said he needed to pee. He is pushing so hard to pee. Can't go. Has increased pain. Not happy. Screaming from pain in his head and his belly. Gets pain meds. Nurse checks. abdomen slightly distended. Resident tells nurse to let him sleep and see if he will relax and pee in his sleep.

2am. I am pulled from my sleep by Gabe's shrill scream...."I AM GOING TO PUKE!" Puking commences. Pain increases. Head and lower abdominal pain. he is miserable. Pain meds given.

2am-4am Puking and pain. Long night. He is not sleeping for more than 5-8 minutes at a time. I am starting to panic that there is something really wrong with him. The nurse calls the resident who tell the nurse to give Gabe a bolus of saline (5oocc) over 30 minutes and then call him back if he has not peed. Labs ordered by neurosurgery for blood work. They also order a one time order of reglan IV. Tell me that his urine had glucose in it. You dont spill glucose into your urine until your blood sugar is greater than 300.

4am I am told that we will be moving to another room due to PICU being full. Not going to the unit. No beds. We will be going down to the CICU which has been closed due to low census.

4:45am Saline started. We are packing to move. He finally passes out from valium and dilaudid.

5:15am we move to CICU. they are going to use it as a step down. There are 12 beds on the unit. 4 private rooms and 8 open units. We are lucky enough to get a private room. THANK GOD! Saline done. Now we wait an hour to see if it works.

5:25am I cannot sleep. Gabe's heart rate is low (which is normal when he is out on narcotics and sleeping) alarm keeps sounding. Our nurse is still moving the other 4 patients that are moving to CICU. I just sit in the chair.

6am the nurse comes running in asking why I did not push the call light and have him reset the alarm. I told him it was not disturbing Gabe and it was no biggie. Resets alarm to alert at 50 bpm. said he would be back to check on Gabe in 30 minutes.

6:15am was the last time I looked at the clock. I dozed off.

6:30am Nurse back. No pee. Unable to pee. Crying from pain and attempting to pee. Time to straight cath him. Got back almost 800 cc of urine. He looked 9 months pregnant. Urinary retention is a side effect of Dilaudid. We will discuss with neurosurg when they come in for rounds.

7am I doze off and neurosurgery arrives at 7:10am. We discuss the plan for the day. Amanda (ANP) removes Gabe's dressing for his drain and lets his head breath. We decided that we will deal with the urinary retention and leave him on the dilauded. Gabe vomits again. Amanda tells me that this is normal and that it could last up to 5 days. She got the look. LOL she laughs and gives me a hug and says it will get better. I dozed off at 745am and nursing was there at 8am. Dozed back off at 8:45am Dr Frim and Amanda back at 9am. We discussed his headaches and we decided it is from low pressure. The drain is draining lots of CSF. Time to take out the drain since there is very little blood in the CSF. Just enough to give it a yellow hue. Amanda said she will be back later.

9:35am Sleeping Boy


1045am Gabe wakes up screaming about his head. Dilauded given.

11:30am we have visitors. Thank you Pam and your sister for visiting!

12n Amanda back to remove the drain. Gabe will not turn to the left becasue of pain and we need him to, to remove the drain. He is screaming from pain. Remove the drain, apply a pressure dressing to hopefully prevent a leak.

12n-2pm he visits with our friends, eats and sits in the chair. Urinates a bit. :) Gets pain meds.

2pm in bed, sleeping. OUT COLD!!! very hard to rouse nurse getting a little concerned that something could be going on.

6pm...Kid you are getting woke up so your LOC can be assessed. We order dinner. He refuses to eat. 6:35pm

10pm off to sleep for the night. Saturday woke about every 4 for pain. given tylenol first.

8am wakes up. Wants to use potty. Up to chair. STARVING. Order breakfast. He eats everything.

11am wants back to bed. Goes back to bed. Sleeps

2pm wants lunch

3pm vomits lunch rests until his sisters and gramma come at 8:15pm.

10pm in bed sleeping... Sunday wakes every 4 for tylenol. Getting motrin every 8 round the clock.

9am gets up to use potty into chair. wants to wear real jammies not the hospital issued ones. I put them on. Neursurg comes in. Surprised that he is up in the chair and eating so well. I asked about going home. 10:30am I am getting my car out of the parking garage. :)

10:40am Gabe in car.... Home 1:15pm... :):):)

His Dressing:


We still do not know the cause of his glucose in his urine. His blood sugar was only 145 so not high enough to warrant concern. I will be discussing with my ped and have a follow up urine done.

Fine tooth comb....

I have gone through my blog and removed any and all information about the kids and their health issues. I will be moving it elsewhere so if you want the link email me :)

Orchid Hell....

12 orchid leotards
12 orchid tap shorts
12 orchid tutus
12 orchid bows to be attached to clips
My office looks like someone puked orchid colored satin all over it. (And NO I will not be sharing a picture as my office is also currently trashed) ;)

All I need to do with G's costume is attach the snaps and we are good. :)

F's Birthday Party

Happy Belated 2nd Birthday my sweet Baby Girl! You are awesome and perfect in EVERY WAY! You are so sweet and funny and you always have the most amazing smile on your face. I just love you to pieces. You siblings adore you and you have H wrapped around your finger. Anything you want Hannah gives you. You look at her so adoringly and it melts my heart.

I love your hugs and the way you grab onto my neck when you give me a hug. I love the way that you grab my face and pull it to yours when you give me a kiss. You have started making the mwah sound when you kiss. It is so sweet. When I put you to bed at night you will try to delay going to sleep by signing "more" when I am trying to leave the room. You want more kisses and hugs. I cannot help but oblige you.

You got a new chair from A. Nancy, A. Jane, Jen, Karley, Mason, U. Bill and U. Dan. You absolutely LOVE IT! It is a princess blow up chair that fiber optically changes color. It is too cool! You wanted to take it to bed tonight. I took it away after you fell asleep.

Your party was perfect. It was just a small gathering. There were 10 kids and 17 adults. The kids were all awesome together. No fighting, bickering, tattling or anything that was negative at all. It was so peaceful and calm. The adults had a great time visiting. At one point it was just Dar ren , my cousin Jo sh, and my BIL T om in the pool with the kids. They had so much fun. Eventually Ma ndy joined them also. I wish I would have made it out between rain storms to get pictures. It rained a few time. Mostly quick showers and the kids would all come in then go back out when it stopped. It was a beautiful days.

This year I opted not to do goody bags. I am tired of the cheap crap that people put in their bags and all of the candy. Normally I am pretty good about just putting "better" stuff in it than suckers (AKA LOLLIPOPS! ;) ) but this time I said nope.

Since it is one of my biggest pet peeves when people let their kids run up and help the birthday child open their gift. It means that someones gift does not get logged and I cannot write a proper thank you note. I decided to try something different. I made Miniature Mickey Mouse cakes for the children. I made a bowl of frosting and gave them sprinkles (aka jimmies) ect to decorate their cake with while Fa ye th opened her gifts. I know have a complete list to write thank yous from and the kids had an awesome time decorating their cakes. Ga be was the only one to come up to Fa ye th and she was wanting to show him her gift. It was such a nice day. So much fun.

Baby Girl, I hope that you had fun. I love you so much it makes my heart hurt!

I LOVE YOU!
Mommy

Party Pictures