Sweet Baby Fayeth

I wish you could all see this little person in live action. She is a riot. She makes me laugh. She is a never ending source of enjoyment to our family. This sweet baby has a sense of humor to end all. She is just something else.

I just have to share these...

It will never cease to amaze me how this child can go from ROTTEN

To Sweet and Angelic...
To ROTTEN TO THE CORE all in 1 minute. :)

My Little Man. He is a little rough looking these last few days...

Our Night Time routine of Hugs.

Lindsay making her Grampa Face....

This would be Lindsay McPhee, her and that tooth. LOL In some pics you will notice that it hangs down farther on 1 side than the other.

Hannah

Sisterly Love. (See check out Lindsay's tooth)

Update....

Well, without even reading my blog, the husband did the small task of putting the Christmas crap in the attic! WOOHOO!!! I have to upload some pics and I will post them. My sweet Lindsay is going to be toothless soon. She has 1 on top that is about ready to come out and the 2 on bottom (On the sides) are started to loosen up significantly.

Spring is in the air...

and my husband is in a panic. Yesterday I called him at work to ask him where the key for the shed was. Immediately attitude started. “Where did you put it last?” “I don’t know” “You have a key to!!!” He knows what this means. It means PURGE, Toss or Sell. He HATES when I get into this mode. It makes his intestines hurt because he now knows that he has a TO DO list.

The only think that Darren and I get into a disagreement about. His lack of motivation to complete said TO DO list. He believes that he should be able to complete it “When he wants to or When he gets around to it”. It does not work that way. If I am cleaning the garage and I do 99% of the work, then you need to complete your 1% so that the job is complete. He always is bitching that *I* start projects and never complete them. But what really happens is I do 99% of the work and then the 1% that I need him to do because it involves going up on a ladder or lifting something heavy he NEVER does and *I* don’t complete projects. For example, I am waiting for him to place our Christmas trees up in the attic. That involves a ladder and the bag is very heavy. My theory on this is easy. 1) I am scared to death of heights. PETRIFIED!!! 2) If I get hurt WHO THE HELL IS GOING TO TAKE CARE OF THE KIDS? If DARREN gets hurt…there is short term disability. He will get paid to stay home and drive me crazy while he pisses and moans until I take care of him. He could take a vacation. He could lie in his bed for weeks while he recovered. Hell, I would even put his computer up here so he could play his game…if he would just do the damn TO DO LIST.

I am motivated because I am selling all our baby stuff. I already sold 2 cribs and the changing table. So the other crib is being sold, side rail for the twin beds, triple stroller, double stroller, double umbrella stroller, single stroller, single umbrella stroller, a 1 year old car seat that I decided that I no longer liked, and a plethora of toys for children 2 and under. Baby clothes are going as well as the insane about of hunting shit that Darren has collected. You laugh, but I am making that man go out to the garage with me and sort out, log and inventory exactly what he has so that I do not end up with 30 different types of duck calls in my garage in a plastic tote. I am going to copy, and put it into a binder for Darren so when he feels the need to go to Gander Mountain or Cabela’s he knows he will need to check the list so that he does not bring that crap home. It is not like he has even duck hunted in years. We have something around 6 + dozen of duck decoys in our shed. And NO! They are not all the same and YES they need all these there are different types of decoys to attract different types of duck. Lets just put it this way. It would be less expensive for me to go and buy an already fresh dead duck for Darren to have every week than it is for him to hunt for the little amount of meat that he is going to get. And he does not even hunt Duck anymore. You know though, he just might. Yeah whatever. Duck hunting requires getting up too early for you my dear. SELL THE CRAP. J Now you can see why he has this issues. *I* am the voice of reason. Just like the 5 dozen t-shirts he has from college. Sweetheart, in the 11 years we have been dating you have not been able to wear that shirt. You are not going to be able to wear it now. It is dry rotting. Either donate, pitch or let me tear them up and use them as rags. (which btw I would never do, I would just pitch these dry rotted, thread bare t-shirts)

I am thrilled at the though of the space that we will have in our garage. Of course, HE will just fill it up again and *I* will be forced to purge again. It is the nature of the beast being married to him. He has a shopping addiction. That I will go into later. My husband and his inability to walk past ANYTHING that is marked down to 90% off. Just think…Window Air Conditioner Unit.

Poor Gabe

A couple weeks ago I posted this entry. As I was looking back through pictures today I found these 2. Taken before the linked post.

These 2 are just little characters at night. She has to pester him 9000 times and tell him good night and give him a kids. Then she yells, "NEE-NEEE!! NIGH-NIGH! I WUB U!!!" the starts "HONEY!!! NIGH-NIGH! I WUB U!!!" Which of course starts the Waltons of Good Nights.

Fayeth

I have some really neat kids. I need to photograph them more often. Our Baby, Fayeth (sounds like FAITH) is just the best way to end our child producing years. She is a riot. She has her moments, of course and she has verbal issues, but I see that as all part of the chiari. She is not able to tell us when her head hurts.

She has a wicked sense of humor. And I do mean WICKED. She is SOOOOO me. As ornery as they come. She is absolutely rotten. And I CANNOT.STOP.LAUGHING. She is SOOO the baby. She gets away with so much more than the others would have. But also at this age I was able to carry on a conversation with Lindsay, Gabe and Hannah. Fayeth talks, but not like the twins and Hannah did so I forget sometimes how old she is. She is so funny and ticklish. Putting lotion on that child after a bath is like trying to pick up a seal smothered in baby oil. You go to rub lotion on her and she laughs and her legs give away.

She spends most of her day in a costume of some sort. Darren and I hope that these pictures are not of her future aspirations.






Thank goodness Daddy hunts....

Frustration

The weather needs to break soon. I am officially in a FUNK and I need some sunshine!!!! Yesterday was a horrible day. Lots of frustration and tears. I have come to the realization that our wonderful peds practice is just not capable of managing Gabe's care. I will be calling around today to start interviewing new peds. I NEED a ped that can manage day to day care of a shunt. One that can tell me, "Based on my assessment, this sounds broken" or "Based on my assessment it is fine" or "I think that we need a shunt x-ray". Unfortunately if we call after hours and Dr. V is on call before I can even get out "Hi. This is Michelle H.... I am calling about Gabe..." Before I can get the entire word out she says (in her broken Brazilian accent) "You need to just call UCH NS". Ummm but I had a question about his asthma??? Our peds, Dr A and Dr B are no better. I guess he is just too much of a liability. *SIGH* They are not on the same page as us. For example.

5 days post op Shunt revision, Gabe starts running a fever. Lungs clear, ears clear, throat within normal limits, ect. I called to get an appt to have Gabe checked before I would have to take him to UCH. His incisions had a dressing over top of them and steri-strips glued into place. I really wanted him checked over to Rule out incision infection and if it was a viral infection. I am not driving 1.5 hours to be told in UCH ER that it is just a virus and WHY did I come all this way before stopping at the peds to have them rule out that it was a virus? Dr B made me call the NP at UCH. The NP was like, they need to see him to rule out that he has an infection somewhere else. UGH! But the Dr would not see him because it could be a shunt infection. ARGH!!!!

I spend a lot of time beating my head on the wall.

Frim called last night and our choices of trying to make Gabe feel better for now...
1) Have him sleep on a wedge. When you lie flat your ICP goes up. This shunt valve that he has does not drain as much when he lies down. So our solution is to having him sleep propped up and see if that helps with his CSF drainage issue.

or

2) Leave his shunt setting where it is at and buy an abdominal binder and use it when he has low pressure. The abdominal binder will put pressure (resistance) on his shunt tubing and cause less drainage of CSF.

or

3) Set his shunt at 1 level during the day and reset him at night at a different level. Though this will eventually wear out the valve in his shunt and will break it.

We will still see them at the end of this month.

I think Frustration would be the name of the game.

A lot to process

This weekend has been a rough on for Gabe. Friday he fell 2 times landing on his shunt reservoir and valve. He scrapped up his side pretty nicely and shifted his valve to the left. Being that the reseroir and valve just sort of plug into each other, I was a little concerned that he could have broken the connector piece or completely disconnected the shunt. He had a squishy spot around the valve and it could not tell if it was swelling from the trama or a CSF leak. He was in considerable discomfort. The third time he fell was out in my mom and pops driveway but he only landed on his bottom and his back was a little sore. His shunt catheter goes between 2 vertebra into his dura (spinal column) so his tubing could have been crimped a bit. Dose of pain meds and I allowed him to stay at Gramma and Grampa's house. We discussed the falls and he said, "MY vision was blurry and the room was spinning and my legs and arms were tingling. Then I was on the floor".

Saturday I go to pick up Hannah from my mom and pops for rehearsal and Hannah tells me, "Gabe fell". Gabe comes up and tells me I fell down the stairs.
Me: How many stairs? Where did you hit? Do you have pain? What was happening before you fell?"
Gabe" I fell down 4 stairs on the spiral staircase, I hit my back on the backs of all the stairs. My back hurts, my side hurts and my head, neck, legs and arms hurt. My vision was blurry the room was spinning and my legs were nailing".

I get home from dance, talk to my mom, Gabe is doing well. He wants to spend another night and play pool. I let him.

Sunday morning my mom drops them off on her way to work. "Gabe's legs were bothering him so much last night, especially the right one, that he would not walk on it. He scooted around the house on his bottom. (On a side note Lindsay also lost her 3rd tooth there Saturday night---Hint Hint Gramma, A PHONE CALL Would have been nice ;) )

Thing 1, 2 and 3 get ready for dance and we leave. We arrive at 10:45am to prep for costume fittings. Rehearsals are not until 1pm & 2:30pm. The kids play with the other seamstresses kids and all of the kids are awesome. Go to lunch at 12:20 and everything is wonderful. 1pm Hannah and Luci go upstairs to the studio and 1,2 Brandi (Luci's Mom and my Co-Backstage coordinator) finish our lunch. 2:20 1 & 2 go up stairs for rehearsal. Brandi and I pay the bill. Upstairs we go. Brandi leaves to run a few errands, I chat with some of the other moms. Jennifer brings me Gabe. He is pale and clutching his head. I know what this is but I ask him. "He head is killing me, My head is going to collapse in on my brain". He lies flat and feels better. He decides he is going to go back up for rehearsal and within minutes he is back on the ground in the studio. I go into studio and he does his best to participate. By 3:30 he is not able to sit up without wanting to throw up. 4pm we leave to come home. The ride on the way home was torture for him. Being upright makes his head hurt worse because he is having low pressure issues. He needs to lie to bring his pressure up. He finally falls asleep from exhaustion from crying.

The rest of the night is rough. Gabe is up and down. Finally he is excited to go to bed because he knows he can lie flat. He sleeps the entire night. Which for us is a sign that his pressure is low. When it is high...he is up throughout the night because lying down causes his pressure to get too high.

Around 11pm while I am all snuggled up in my bed on my lap top reading caringbridge pages/carepages/blogs I get an email from Frim. I had emailed updates to hi over the weekend to try and figure out what we can do for him. His email really put me in a bad place. His email went to a place where I did not want to go back to again...

"...I think that one thing we need to do is repeat his brain/C-spine MRI to make sure that the new drainage dynamics have not caused his cerebellar tonsils to be pulled down into his cervical spine again.

Please try as best as possible to keep him from hitting the shunt stuff . .."

If he has again herniated we have to do to the discussion of another decompression vs a re-expansion of his head. I am not sure what that means for his shunt. If we would have to move where his shunt is placed or what. One of my worst fears was actually written. Visible to my own 2 eyes.

A little while later we again emailed and decided in the AM to reset Gabe's shunt up to 5 and email him Wednesday.

This morning Gabe crawled into my room and climbed on my bed. Everything aches, everything hurts. He would not even prop his head up on a pillow. He crawled out to the living room so that I could re-program him. Flat on the couch. Noon, I fed him while he was lying on the couch because he was still having symptoms of low pressure. By around 3:30 he was able to get up and move around for a small amount of time before needing to lie down. He ate dinner at the table with the family. By bedtime he was happy to be in bed. Pillow on the floor. Happy but hurting.

This is where we are at. MRIs for the kids being scheduled. Concern of the unknown.

On a side note I would like to add, I have very few bad days. Or, when I do I do not always share them with but a few people. I do not post them to our playgroup board. I post NOTHING about my kids health issues on the board anymore.

You know, not many people can understand what is going on. Some people know because they are walking this journey with their children. Some are family and are walking this journey with us. There are a very few special people in my life who have taken the time to google chiari, google PTC, google Cranio. They have developed a working knowledge of neuroscience. They understand the amount of pain that is involved in these children's lives.

They allow me my dark moments. They allow me to vent and be mad at God. These are all OK for me to do. I am allowed to say that sometimes I feel like I am being punished for "things" I did. Do I honestly believe it? No. But I am allowed to admit that sometimes that I feel that way. I do not need lectures on how I should feel. I do not need lectures on God. I get on my knees every day and pray. Every time they take my child back to surgery I turn it all over to God. HE knows I have my moments. I am not perfect. He allows to me have these feelings and He gives me the strength to get through the next day, hour, minute or second.

I have been on this journey for over 5 years now. He has gotten me through every surgery, every recovery every day. For the most part I have weathered it well. I am allowed to have a breakdown every so often.

This is my blog. This is the only place that I can write my feelings on how I feel. The caringbridge page is about Gabe, Lindsay, Hannah and Fayeth. This blog is about our family or whomever needs an entry. This is the place I come to put my feelings out there. If you want to comment, that is fine, that is your choice. But if you cannot be supportive and uplifting, DO NOT POST A COMMENT. Just leave. I will be authorizing comments that way I do not have to go back and delete comments.

How am I doing???

That is the popular question. It depends on what time of the day you ask me. If you ask me first thing in the AM, I am normally upbeat about the day. If you ask me around lunch time, I am still hopefully. By dinner time I am just wanting to get everyone fed, hope that they eat and then fairly easily with as little pain, in bed. By the end of the night I am emotionally, physically and spiritually spent. Drained. Empty. Bankrupt. Exhausted.

I was recently accused of using my “sick child as an escape” by using that comment (feeling emotionally, physically and spiritually drained). But, it is true. I do not expect others to understand. But that is how I am doing.

Lindsay’s chiari diagnosis sort of threw me for a bit of a loop. I *KNEW* in my heart she had it, but I was hopefully that she did not, if that makes sense. However to see it on a computer then in writing, it just gives another blow to us. She will need to have a completion MRI of her thoracic and lumbar spine to check for a syrinx or tethered cord. If she has either of those (which I do not believe that she does) then she will need surgery. Right now, I believe that if she does not have either of those then we can control her symptoms with meds. Of course when we told her she handled it with the grace that is part of her. No tears, very matter of fact. She discussed that if she needed surgery that could I please put her hair into 2 French braids on each side of her head with a part in the middle where her incision would be. The thing that just put a bee in her bonnet was that fact that she cannot ride roller coasters. She is a strong little girl.

I have been struggling with the fact of my infertility. Maybe it was truly God’s meaning for me not to have children. Is this my punishment? I struggle with the fact that I am symptomatic and I probably gave this to my children. Then I think about my grandchildren, should there be any. I think about their pain and hurting. It gets overwhelming. I know in my heart that there is a purpose for this. I want it, need it, pray for the purpose to be shown to me.

This world that I live in, is not an escape. Watching my children suffer is NOT an escape. This is nothing short of hell for my kids, hell for me. THIS is not fair. This SUCKS. I do not care that life is not fair, my child(ren) should not have to suffer.

Though right at this moment I am ranting, I am really holding it together well. Right now would be a low moment. But I will get into a little further down the page.

I have a few very close friends who have walked this journey with me. I have met a bunch of great families who are walking this journey and are there for first hand support. The ones who have lived it and are living it. I have people that I do not even know, praying for my family and that is a wonderful feeling.

We are NOT quitters. We fight the battle when it is WORTH fighting for. We will FIGHT this battle and we will win. I refuse to believe that my children will suffer. I will not accept that.