Pages

Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, August 29, 2013

Grateful #1

 Remember that I am trying to think of things other than the every day items, so be patient with my choices as they might be slightly unusual. 

Today I am thankful for....... 

Running indoor water.
Today I took a shower that was warm. I brushed my teeth, cooked, used the potty, washed my hands, washed laundry, washed dishes, drank cool water from my fridge, rinsed binki's and so much more. It is there and non stop. I am so grateful for it. I can't imagine what it would be like to have to haul it or go to it. I just turn on things and it is there.

Fingernail clippers.
They bring relief from baby razor sharp nails. They also make kids fingers and toes look so much better. I have tried to cut with nail scissors and file away the length. Both of those just don't work as well. Some amazing person had the same stress as me and invented this handy little tool. 

Ziplock baggies.
I sewed these into a small roll. It is so handy to have and keep my bag tidy. Snacks stay awesome, things stay organized and clean. They are really awesome. 

Photo purge


Happy morning!

Ry, Grace,Auntie on the lift up to the Alpine slide.
 Gator fell in the bath tub and scored this beauty

 I gathered these flowers and twigs from around my yard and neighborhood to take to Jenivee. Her favorite song is "you are my sunshine". I love that sunflowers always follow the sun. So when I see them it reminds me of our little girlie. My neighbor helped me tweak it a little by adding a moss ribbon and a little birds nest. Those things aren't pictured.
 Mays boogie eye:(
 Where is May??? Follow the tubes... This is our way long tubing to drag around the house. 
 Here she is!!!
She isn't curly at all. I just want a little curl but I guess we will just do straight. 

She was so rashy I was willing to try anything so she got a bath with Epson salt.
 I would be miserable if this were me... Poor little girl.
She loves this paper.it crinkles and crunches,it must also be super tasty! I will just believe and not try it myself.
 After the rainstorm. Ah she is the sweetest girl,tonight she told daddy that he is so cute. Then she asked him if he liked pink and purple. Of course he does. Awesome. 

Okay, purge over for tonight! 


Wednesday, August 28, 2013

Purge

There has been a great deal going on in our little house hold. Sadness mixed with happiness. I wish I would have written things down in order so that my mind would be able to recall the details. I am going to try and get it all out so that it is here for years to come. Meh.. my memory is hazy from lack of sleep and momminess.  Starting out when our Grace was here visiting... The kids had so much fun with sleep overs, shopping, and Park City fun. It was so neat to get our girl for that time. There was girls camp, which I completely wanted to attend but was stumped on what to do with a BF baby on oxygen. I guess it just wasn't my year. My girls made me feel happy that they missed me. Ry got her beloved Ipod fixed and is slowly earning it back by doing extra jobs to cover the cost of the repair. My flower beds look A-mazing in back. I went through all 4 kids dressers and closets and de-cluttered each room. It was like spring cleaning in the Fall and it feels fantastic. Most of you that know me, know I love organization and cleanliness almost as much a good food. I don't expect if from my friends... just me and my little family. One of my big secrets on keeping a tidy home is not filling it with unneeded things. When you don't have much, there isn't much to clean up. But we are richly blessed in so many ways we hardly miss the "stuff". The kids went off Track for school on Friday the 16th. That was also a very difficult day. We got a phone call from my little brother that my niece Jenivee was struggling with her health. She had been in the hospital since Monday but was diagnosed with a terminal illness called, Mitocondrial Lactose Acidosis... I hope I spelled that all correctly. It was very rapidly making her very sick. We gathered at the hospital to kiss and love her and take pictures with her. I wasn't sure how long she would be with us and what this all meant for my family. May is the only child to have a cousin close in age, the little girls are just four months apart. Jenivee shares a birthday with my Father in Law. Little did we know that it would be our last "see ya later".  Her illness was so progressed that her little body as hard as she fought could not overcome, she got her angel wings the very next day. My little brother loves the outdoors and that is where he wanted her to be. Primary Children's Hospital fulfilled every wish. They said that nothing we asked would be something they would not try to accommodate. We got to go to the 4th floor terrace... There we overlooked the lights of the city, the stars, and the moon. It feels like a little piece of heaven and for us very close to heaven. I am sure angels were present and those who we love welcomed Jenivee until we can all hold her again. It sure does't seem fair. Except I know that it is only us who are suffering. She is well and whole and we are the ones with the aches in our hearts. There were so many tender mercies that I am so grateful for. My sister in law saved up a whole bunch of time off. She got to be home with her, her entire life to nurture and care for her. My brother was a true father and went to work to provide, pay bills, and make sure that the needs of the family were taken care of. Jenivee went to a family reunion, she came to our house, she visited grandparents, she smiled even with pain. She is a little piece of SunShine. Chaison and Jessica didn't even hesitate when they were asked if Jenivee would be a donor. That is so close to my heart because of Alex (he will most likely need a heart transplant at some point in his life). Jenivee lives on in the lives that she saved or made better.

On the 20th Miss May went to Pulmonology. We just can't make heads or tails of why she needs oxygen. The doctor is stumped. We took her off and her Sats plummeted. After putting her back on she would go right back up to happy. So our first action was to try a microbial antibiotic. Azythromicin. We also had the doc sign for a handicap placard. It is a blessing to my family. Any time I go any where I try and scout a good spot. Or try and park next to a cart return because there is so much to manage into the store. The oxygen tank, baby in car seat, diaper bag/purse my 2 year old crazy.. Plus try and close and lock car doors and remember the keys. This gets me closer to the entrance so that lots of variables are cut out. Whew!!!
The next day she woke up with her eye red and totally boogied shut. Awesome. I called into the ped for drops for pink eye. Then she also started in on a low grade fever on and off. She seemed fine for most of the day. That was good because it was Jenivee's services and a hard day. May was very clingy and really only wanted me. Her fever started again.. That fever grew through out the next day and into the next night. She wasn't sleeping and her fever was 103.2... I woke daddy at 2:45 am to give her a blessing and help me come up with a game plan. I am not rational when it comes to very sick babies. If we couldn't keep her under 102 we would take her to be seen. The next day she was so miserable. She only wants me to hold her and I am so tired from lack of sleep that I can't even see straight. Friday night was another sleepless night and full of fighting fevers. She kept going over 102 so Saturday morning I called the pediatricians office. It must have been a bug that was racing over Utah because the pediatrician was full and I had to take her to kids care in the Riverton hospital. It ended up being a good thing because they wanted x-rays. We also ran an urinalysis to check for any infection in that area. The X-ray machine in this office cracked me up because they sat her on this miniature green plastic bike seat. Then with her arms wrapped up above her head they closed a clear plastic case around her. Her arms where stuck up around her ears and she was MAD. Good thing it was quick. The x-ray showed hazy lungs.... because we aren't sure if that is the same or something new... We started another antibiotic, Amoxicilin. They called in pneumonia. Sunday we stayed home from church. Hoping to avoid sharing our ick with others. We are good sharers in most cases but sharing ick is not good. Fevers broke Sunday and for the most part my little girl felt better.
Monday was busy playing catch up and other things... More cleaning of the household and deciding to start Ry with some sort of allowance. She is such a helper. It won't be  much, just a token really trifle (that is from little mermaid) She will get 5 dollars a week. She also started doing dishes along with her other responsibilities of homework, reading, music practice, personal laundry and Saturday housework. That night the kids went to Grandma and Papa H for a sleep over so that it would be easy to go to May's appointments up at Primary's the next day. That night May also broke out in an awesome rash. Holy Crud, Batman!!!! could this little girl have one more thing? I called into the pediatricians office and added Roseola to our list of ailments. Sheesh... By now you are thinking " I hope that girl has the ped on speed dial" Why yes... yes... I do... That was a really good nights sleep. The best I have had in a long time. I still woke up at midnight, 3, and 5 ish and heard daddy leave at 6:30 but it was nice to have just the three of us and not the early wake up and fix breakfast. We met with Neuro first. The Doctor is pleased that her incision looks much better and says it is healing nicely. He also calmed my fears about her little feet. When she first stands on them she only stands on her toes. He said if we hadn't done the surgery that she would have had bigger issues with that. Also, her constipation issues would become more regular and painful. It was smart to have this surgery in order to prevent damage that might occur. It was a very short appointment. Short and sweet. May decided that she likes the paper that they put on the exam tables. It has a super crinkle sound and fun to wrap up in and taste. Then we went up stairs to see Cindy W. in the RMH Family Room. The Family room is so beautiful and we had originally brought her a loaf of Dunfords bread with her thank you note.  Somehow I lost it in transport. I later found it under the passenger seat. I have no idea how it got under there. We did take her our thank you note. Then we went down to check in at imaging. We passed the gift shop on the way and bought some special treats for the sibs and a new teddy for May. She snuggled her bear, tasting him so that brown fuzz stuck to her nasal cannula making a nice stache!!!! So funny. She is starving at this point cause the last time she nursed was before we left the house that morning. When they called us back to do the swallow study.. It was no surprise that she gulped down the barium. Eeeeew. Let me tell you about the diapers as a result of that stuff. Very interesting... The swallow study told us that she is not aspirating. A wonderful find if we knew why she was still needing oxygen. At least we can check that off our list of things. She pools a little at her epiglottis and she got red in the eyes and teary like she was choking but the study doesn't show that so the speech therapist was planning on writing this in her notes. We made up a log of her sats and I have been checking her two times a day on and off oxygen and at this point it is so obvious that she needs it. Our next step is a CT scan. I can't remember what they would look for during the scan other than abnormalities and or growths. So onward and upward.... On the way to grab my others I stopped to buy notebooks for YW. I am teaching this coming Sunday and after prayerfully trying to know what it is that someone could really hear. I had a friend come get her hair done and talk to me about a talk she had read in the Ensign. It was about being grateful. She wanted to write down each day something that she was thankful for and why. At first is was the easy stuff... My house, my husband, my kids/grandkids. But then it came way easier and she was thinking of things that have become so everyday that she never thinks to thank Heavenly Father for. All of the sudden it seemed that she had so much more than she could imagine. I was like.... this is what the girls need. In the midst of the most trying years of their lives they need to step back and be grateful. So I bought 25 yellow 1 subject notebooks. I hope the girls will journal a couple of things each day. I will be doing mine here. We will continue until Thanksgiving and by then we will have a true spirit of what Thanksgiving is all about.
I went to grab the kids, they were having a fabulous time. They had all just jumped out of the shower after being caught in a wonderful rainstorm. and Munchie was snuggled so nicely she closed her eyes for a little snooze...
The rest of yesterday and today has been resting and playing. All mixed with cleaning. Tomorrow I think we will get out. Maybe a Thanksgiving point is in our future. Or maybe we will hit a session at the indoor tramp place... Or maybe go to a free movie at "sticky shoe" or maybe we will do all of the above... Tomorrow is fun day....
*Plus Picture purge to come.....

Monday, August 19, 2013

Jenivee June

http://walkerfamily-mortuaries.tributes.com/show/Jenivee-June-Clawson-96293563

This is the little obituary for Jenivee... If family wants to leave a comment here I will print them and give them to Chaison and Jessica. There is also a way to do that on this site. 

Wednesday, August 14, 2013

Such a beautiful Sunday Afternoon.

We have such beautiful mountains here. It is so easy to jump in the car and find a fun place to eat. On Sunday we made a picnic (open fires are out for us till May is off oxygen) Then headed up the canyon. It must have been everyone else's good idea too because finding a open picnic table was a teeny tricky. But we got it sorted out and enjoyed the afternoon eating... Playing in the dirt.... going on ad-ben-chures and visiting....

 Find a princess chair and sit your hind end in it... She tells us
Even a picnic tastes better in the mountains.

He had to test it to see if it was poison...

So did he.

 Grandma and Papa with May
How about a nap? Sure hand me that handy dandy paper towel pillow...ZZZZ

Proof I was there


May and Gram


My inner germaphobe had to take a back seat and let this little boy be a boy.

Auntie Lisha and May


Auntie let her have Cheeto's 

Me and Munchie Moo on an adventure (adbenchure)
We stopped to look for fairies that might build their house in this little tree. It looked so cute and lovely...

We walked about 500 feet and she thought she had had enough. I told the other two to stay within range of my whistle. They know that one blow means "come right now" two blows mean "you are in deep yogurt... you better run the fastest ever." if they don't show up after two blows then I call all the neighbors and possibly the police to find you. Funny that neither of my older children have ever gotten to a second whistle. Ry would die of embarrassment if I called neighbors to help find her.


 Then we found little sticks and spelled her name...
 And we talked about this being a fairy table.
Ry played horticulture with Grace. They gathered leaves and plants and analyzed leaves  and crushed things into mush...


and blew bubbles.


There may or may not have been a water fight that someone started, and someone else clearly finished...Bwahaha!


Then we made flower wreath hats...



 Grace found Gram this perfect pine cone that looked like a rose.
Aunti Lish killed us at games... remind me never to play games with her.

Papa and Gator played games too.

 May snoozed in the breeze and Sweet Daddies arms...

Followed around the older kids...


She masterminded things and directed the younger people.


And it was a wonderful, wonderful memory!




Just one good Photo

The Grands wanted some Photo's while Gracie bug was in town...









Friday, August 9, 2013

Slow at healing

Maybe because of where her incision is located it still hasn't closed. It is healing, just very slow. She seems like she is mostly back to normal. We finished off the last of her antibiotic today. With that finished we will need to watch her for fevers again and hope that they don't resurface. That would mean she is still having infection issues. Two more weeks until we meet with pulmo. I am interested to see what will happen. Because everyday I check her she is so happy at her 97 on a liter of oxygen and then I turn her air off and she goes down pretty darn fast. Down into the low 80's not normal for an otherwise healthy girl. I wonder what testing needs to be done and what could be making her dip so low. 

Sunday, August 4, 2013

I am stuck!!!!



I imagine she is saying... "I am stuck, help, help, hhhhhheeeellllppp!" 

Ooopsie dropped my scrunchie.. Maybe that is what she was after.


Looks like I need to organize the magazines again. Don't judge me. It took her about three minutes to get this far... Silly girl. 


playing catch up a little

I have a bunch to write about and I am feeling overwhelmed because I would like to remember the details of these events and I can't. But highlights are better than nothing and I am going to make it a memory.. a hazy memory....

May is sitting... sometimes she does a full face dive right into the carpet. She also scoots herself. Only moving in the backwards direction and getting stuck. I just follow that handy dandy oxygen tubing to the baby who is wedged between the couch and the table. It is time to bust out the safety gate. That is kind of a bummer, because having that open makes the room feel open. Protection is better than visual appeal. We heard back from Neuro.... Her incision is just going to need some time. If we finish the antibiotics and she still has fevers then we will be looking at going to to have that little spot closed in the operating room. Power of positive thinking says it will heal. Sometimes I worry that I am the over/hypersensitive parent. Then I remember a couple of things... #1 doctors and specialists will tell me if there is something I don't need care for. It happened with her Hemangioma... it's flat, it won't need medical intervention. #2 I am my child's biggest advocate. If there is anything I have learned, especially with MayLee is..... If you think it is nothing just have it checked anyway. It could be something and nobody wants to look back and go... "well we could have really done A,B, or C and because we don't know unless you as the parent do something about it...blah blah blah" #3 I would spend the money a million times over for good health. It is true... I would be as poor as a church mouse if I know my kids are getting the best care possible. It would be nice to spend it other places... But, Health and Religion (my mental health) are the only things that are really important to me... #4 I have two kids with serious health issues... If I am a little crazy, Oh-Well!

Sometimes you just need to smooch this little girl.
Here is the making to what my family thinks is completely amazing... It's called Lemon on the Rocks.(no alcohol involved)
It is simply...Squeezed Lemons, Ice, Water and salt.
It is the reverse of a Lemonade...
One of the Keys to it's deliciousness is to shake it not stir....This way it gets a little frothy...
 It is so yummy... I crave it while I am pregnant... and when I am not... and pretty much any time I think about it... My mouth is watering thinking about it now... Mmmmmm.....
 We get lemons in our toes of our Christmas stockings so that we can have our very own LOR....
You kind of have to be born into liking it... It started on My Mom's side with Grandma Groesbeck. Most of her natural (meaning no in-laws) like it.... and most of her natural grandchildren like it... And now we are on to the next generation of natural great grandchildren. 

In this house we can't seem to get enough.
This is part of my life and my kiddles life that will carried down and one day they will wonder where it came from. Now they will know!

 Ry and Gator started school... Ry went the full first day and Gator had orientation that day... So we walked them to school..
I think she is excited to have a little more momma time!

It is even more cool when daddy gets to come too! 

Here they are in their official first day full day outfits.

Minus his shoes

Daddy did an amazing job on his bike ride last Saturday. They say the ULCER is one of Utah's toughest rides because of the wind and heat. 103 miles accomplished in 6 1/2 hours... He is amazing. This was his first time doing this ride and it was fun and hard all wrapped into one. We won't even compare the rest stops to the MS ride. They aren't even close. They are well stocked but they don't have people going out of their way like the MS ride to really kick it up. Of course I didn't have my camera and I made it to the finish line and tried to find my phone and realized I left it home. My brain I tell ya. So not one single picture of his victory. But I actually saw him cross the line this time. I usually miss it somehow at the MS. I am so proud of him and how much he has accomplished this year. It also helps that I like to carb load with him before the ride... Yummy:}