Life with a boy and his Hypoplastic Left heart Syndrome, Also a baby girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, and Two Super Sister's!

Monday, April 27, 2015

Something hoped for

In the days leading up to our miracle of transplant for Alex things seemed pretty bleak. Alex was still planning his future and thinking about his birthday and turning 8. For those of you who don't know much about the LDS or Mormon faith. We get a choice when we turn 8 that we can now be baptized and become an official member of the church. At 8 we can choose right from wrong. We also receive a special blessing called confirmation, this is when we believe we receive the gift of the Holy Ghost. If you want more info I am happy to share.. But now you understand a little bit why Alex was so excited for this special birthday. He had already decided a long time ago that baptism was something he wanted. We weren't sure how we were going to make it work. 
With his new heart, we can!!! He CAN!!! He got this suit for Christmas.. I honestly thought it would be a suit we buried him in (horrible thought, but one of my realities). I love that he can wear it now! For this awesome milestone. 

On Tuesday was his 8th birthday!! We went to a special lunch at Olive Garden where he had shrimp Alfredo. As you can see he loves this dish!!! 
Grandma Homer's is his very fave but he likes Olive Garden too..

Then we went to Smith's!!! Bruce And Jeff and their team sang to him and brought us treats!!! 

We have and will continue to celebrate throughout the month.. 

May loves helping with yard work. She just needs a little more time to hone her skills. 
She also love love loves the swings at the park.. We spent two hours there and she spent all but 20 mins in the swing.. 
However this is what happens when you take yourself off your oxygen..
It wears a sister out! 

Tuesday, April 21, 2015

Megga catch up

 There is so much to say and to high light for our family memories. Memories I don't want to forget, so I am writing it down.
 Going back to March....
 I actually did fail my glucose test and did the classes for gestational diabetes dieting. I get to poke my finger and test my glucose four times a day. I am starting to feel less toxic. I adore the end result.. but being pregnant is less desirable.
On Saturday the 28th Jeff went on a ride with a team he joined. He was a little late and decided to stay back with a small group of riders that had to replace a tire and so they also got a slow start. He stayed with one particular rider because she knew the route better than he did. It was just these two riders with her leading and Jeff following about three bike lengths behind. A dump truck trailer and a pup on the back came up and was cautious of the two riders slowing to 15-20 MPH and also swerved out to give the riders plenty of room. As it was moving back to cross railroad tracks and the lead rider also got herself parallel to cross the tracks the pup pulled her under and she was instantly killed. Jeff witnessed the entire accident and was horrified that he could do nothing to save his fellow rider and new friend. We have come to find that Noreen is an incredible lady. She has an amazing family that will miss her so much. Jeff has ridden again, I am grateful because he loves this sport so much. He is honored that he got to ride with Noreen. We attended her viewing to honor her and support her husband. It was beautiful.
The evening of the accident was also the general women's conference. Preslee, Ryleigh and I got to go down to the conference center. I enjoy getting to be with two of my best girls. We/I don't take very many minutes away to hang out together. It's usually busy business as usual. This was a great uplifting way to get out.
On the 30th Alex had a biopsy, clinic and treatment. His biopsy came back with zero rejection. We are so thankful for each and every bit of this great news. We also got news that Alex's antibodies are going down. That means that his body isn't trying to fight his new heart. He did great during treatment. I took him that morning and then Jeff came and stayed with him so I could get home and be with the girls and rest. Biopsy days take it out of a person. His health has been so great that we have been able to cut back even further to every other week clinic visits. It has been very nice to not have to make the early morning drive up to main campus or even Riverton campus for a trough. 
April started out with a BANG!!!
Daddy tried to April fools me, but you have to wake up pretty early in the morning, now a days, to pull one over.  The kids tried all day to get me too... I must look gullible or like an easy target because they tried and tried. "Mom!! there is a spider on your head.... April Fools" I think I got that one like 49 times.
The kids had spring break, we enjoyed general conference, and Easter Sunday. Coloring Easter eggs this year was especially fun because the kids were all big enough to enjoy it. We got some awesome eggs. Sorry about the topless ladies.. Egg dye and shirts don't go well. 

Then we held our very own Egg Bash on Monday for FHE. This event is fun because you never know who will win. Two people sit across from each other and roll their eggs so they crash into each other. There is some physics law that says only one egg will crack. The one that doesn't is the winner. Alex was the champ of our family this year. 
I don't know how the kids stumbled on these Youtube videos about Kinder eggs, surprise eggs, or blind bags... they love them. They watch as they are opened and reveal the little prize inside. Well,  they loved Easter baskets because with the plastic eggs, it was just like opening their very own surprise eggs. While I think it would have been amazing to actually get Kinder Eggs, apparently they can't be found in very many places here in the states. To order them makes each little egg 7 to 10 dollars. We do have blind bags apparently, because the Easter bunny brought one to the little girls and Gator.  They were a huge HUGE hit. 

 Easter dresses in Sunshine Yellow! When MayLee got all dressed she looked at herself and said "I am dis(just) so bow-ful (beautiful). I agreed of course. Those little girls couldn't help but twirl and twirl. 

Weeks fly by, and that is great for this gal. I can't wait to snuggle with our newest little guy. Still no name settled on. We have a few names we are tossing around. My belly is getting rounder by the second it seems... Although my self esteem is shrinking... Very large, very uncomfortable... We did get our c-section date of June 12th. There is a light at the end. I just have to tell myself I can make it. My first two babies were not c-section, in fact Ry was actually over due. I thought I would be pregnant forever. I know that can't happen, but it sure felt like it. Since both the little girls came via c-section and I have GD, I get to have this little guy that way. Unless he decides to make an early appearance, in which case we shall see. 
Potty training has begun. We are going slow and making it super fun. She can't do the thing that trained the others. Blowing out matches doesn't work with oxygen. Let's not blow up my toddler. So we found she does love the little carousel at Smiths.

Ryleigh is getting her teeth worked on next. Last week she got spacers in to prepare for braces and a device that widens her jaw? I may not fully know what I am talking about. I just know that it is better to start now because the crowding in her mouth looks like a shark on x-ray. Tons of teeth with no where to go. Today she got them on. So far she hasn't been in too much pain. We have to crank the devise twice a day. We even got to watch our friend and Ortho (Glen Bills) make the piece that widens. 
 Ry also finished her first official play. Shrek the musical. She was a woodland animal.. a fawn... She thought is was so much fun. She did a great job and wants to give this acting and play business another shot. 

Jeff officially opened his biking season last Saturday. We woke bright and early for the Salt Lake marathon tour.  This makes it 4 years he has been a part of this tour. We didn't have the kids with us like we usually do because we were at a conference. It was nice to be able to get up so easy and head over. It was also nice because I was able to do something I haven't before. When the first riders crossed I clocked their time. 7:06 AM.... Then I counted each additional rider that crossed to give Jeff an idea of how well he had done. He crossed at 7:23 but also started in the fourth heat. He was rider 51 out of close to 1000. I am super proud of him and I am sure that he will be pushing it hard next year to beat his time. Man he is fast. He also was able to have his buddy Mark, to do this with. Thanks Mate! 

Eden and MayLee are busy and funny as ever. They keep me on my toes and make home life interesting. Every day that there is sunshine and good weather the girls want to go out and play in the circle. Eden begged daddy to take the training wheels off of her bike. They started working on getting her riding. She will pick it up as fast as the others I am sure.
I just have to share this amazing gift we received. Over the past couple of months I have talked about how wonderful our school is. I just think the secretaries are so thoughtful and probably the sweetest ladies you will ever meet. Especially Bobbi... She made this for our family and I adore it. Ry was even able to help. When our family opened it, it was seriously and event. Then we all had to snuggle it and ooooh and aaaaahhh over each heart and choose our favorite. It has taken it's place of honor in my front room because I love looking at it and showing it off to everyone who stops by. Thank you soooo much! We love it, I am amazed by your mad skills Bobbi! 

(Even the boxes were fun!) 
Just had to share my view of scripture study.. I promise I just took one quick picture and then followed along.. 

Thursday, March 26, 2015

My sixth book

Before you are amazed at my hidden talent, it's just my blog. I have it printed each year. I would have seven books but we combined the first two years. They make me super happy. I went back and read funny things the kids say or did. Remembered and thought about the things we have lived through and watched in wonder as the children grew right before me on those pages. 

Gator is doing very well with his health and seems to be doing amazing. He got to move to clinic appointments once a week. Although clinic appointments are being cut back we still have to check his antirejection medication levels. Today we were able to go to Riverton hospital which is much closer. I had failed my glucos test yet again and was doing the three hour test. We were poke buddies today. I overheard a gal talking to a nurse that was getting her progragh level checked. Being a nosy gal that I am, asked if she just had a transplant too. She was actually on her second kidney and first pancreas. She was fighting some rejection issues and was just working out the kinks in her meds. She was so nice and excited to meet Gator. They visited about all the similarities they shared. 
I think I passed this test too. The third hour screen came back as my only high number. I will have to wait until I hear from the office. I have an app that lets me see results, so I have the test info, just not the official word from the doctor. 

Eden is sleep walking. She does it with a huge smile on her face, but her balance is that of a new walker. When I asked her where she was going, she said she was getting in the van. She must have plans for a trip I am not invited to go on. I steered her safely back to bed and tucked her in burrito style. 

Sunday, March 22, 2015

My amazing Ryleigh

Ry has been busy busy busy lately. I felt like I could finally focus on helping her do something, anything, she loves to try things at least once. We haven't found anything that has made her feel completely committed to make it a passion.
She thought maybe she would give acting a try. When we missed the auditions for a community play. I remembered that one of our very talented neighbors has classes for this exact thing. She was able to start a little behind her group but caught up quickly. She worked hard. She finished up with two short plays, a drama and a comedy. Both of them she rocked. Way to go sister! 
This is Miss Jenny from Acting Out Loud. She is an awesome teacher. Ryleigh is Ernistine Quatlebaum.  A retiree who rides the bus each day and twice on Sunday's. 
This is Ry's star. 
As a result of being part of this class, Ry gets to be a woodland animal in a play at our Junior high. It was tough, but she settled on being a fawn. Her costume and makeup are going to rock. I would love to be a costume designer lady. So fun!!! 
Coming soon:
Pictures and stories of Ry in Shrek! 

Thursday, March 12, 2015

Joy in the journey

Let us relish life as we live it, find joy in the journey, and share our love with friends and family.
-President Thomas S. Monson

In the beginning of his talk President Monson talks about change. How constant change is.
In the hommie house hold we have had lots and lots of change. Most of this change is welcome, and oh so joyful. Some change, although welcome, has been very hard to adjust to. The constant schedule of meds and vitals is a little tricky for a pregnant brain. Oh and daylight saving totally messed up my mojo. I know it's just one hour, but man... I really missed that hour. Jeff has been very busy with the change of his calling, he has managed both things for a little while as a "presshop".  The kids' schedules and routines have been really lax and I want to change that so they are making improvements. May has been potty training. Also a huge adjustment.

all good things... all good things, it's just change. Which can cause confusion and misdirection of priority until we figure it out. We are working hard to figure it out. For family home evening a couple of weeks ago we talked about goals and schedules. We decided to try out a few short term goals and see how we did. A few meaning like one or two per kid, I have to over see each child and my own goals and so that would be a whole load of goals for me. Ry specifically wanted to improve in piano and spiritual goals like being dilligent in personal prayer. Gator wanted to focus on being patience. See, when you are spoiled rotton in the hospital surounded by adults who are willing to do just about anything you ask, it is a rude awakening to be home amongst your sibs who also need attention and would like things their own way.... especially little sisters.... add in a little steroids which cause over stimulation and we have a whiner/tattle tale on our hands. Whoooooweeeee, this momma "ain't got time for that"! So we talked about removing himself from situations that make him feel frustrated and also being able to say that he is sorry for his roid rage. Eden wanted to be better about her homework, which it great because she will remind me ten thousand times that we need to work on it and that we should do her flash cards. I wish some of it would sink in, but maybe she isn't quite old enough to have the memory yet. MayLee May wants to work on her potty training. Now this is a huge goal and we deffinatly take it a day at a time. She does very well with everything as long as I let her play an electronic devise while she sits... Then I try and have her finish up and she wants to stay on there FOREVER....Pretty soon she ends up with a potty indent on her hiney. We always wonder how her Tethered cord will effect her potty training. She could have nerve damage that we don't know about, or she could be just fine. Only time and training will tell. If she does have nerve damage we will cross that bridge when we get to it. I think she will do great and she shows every sign that she will be a rock star potty trainer. This is awesome because I have never had two kids in diapers and I would really like to keep it that way. 
We are thrilled to announce that all the little calves are born and we have seen pictures of their cuteness....
Mariah-moo or M&M 
They are super cute, we can't wait until we can go and actually see them. 
Everything going on with Gator seems to be well. We go to clinics, treatments and 
Caths... We change meds and we love that he is doing so well. 
Eden got ahold of my phone and did a series of hilarious selfies.. Where does she get this stuff???

You're killing me smalls! 
Gator was finally were cleared so daddy set up the bike trailer. Gator is absolutely in love and wants to train with daddy and do a bike ride this summer. Jeff said it's pretty tough to pull him up hills but they had a blast going down. 
Eden tried it too, I think she feels a little out of control and so she will probably wait a bit to go on any big rides. 

We are gearing up for spring cleaning, baby room decorating, garden and yard care and just spending tons of energy being together. 


Sunday, February 22, 2015

Ways to stay part of it all

Just one of the neat things about our "village" is our ward (LDS local congregation). I am pretty certain we belong to one of the most thoughtful wards there is. I have been so amazed at the generousity, patience, acceptance, kindness, thoughtfulness and love we have been shown. 
I say this because just recently it has been proven again and again. 
My girls are picked up each Sunday so that I can be home with Alex to give meds. Then Alex's incredible primary teacher comes to our home. She has such fun lessons planned and prepared. Her hubby comes to drop her off and he is such a fun visitor as well. They have visited him in the hospital, helped with his program part, taught him articles of faith, played with him(that's important too), and loved him. The young men bring the Sacrament to our home. It fills our house with such a wonderful spirit. It is an amazing way to feel connected to our beliefs and strengthen us for the rest of the week. 
That's not all. In about 2 months Alex will turn 8. He will have a choice if he would like to be baptized. He will have to wait until it is safer. Because he is on such high doses of anti rejection medications and steroids he has absolutely no immune system. This means he is pretty restricted on places he can go. Home and hospital are the only indoor places he can visit. So he will be baptized in August. We did Facetime in order for Alex to be part of the "it's great to be eight" meeting. I can't believe he will
Be in cub scouts. He gets to have a special Cub Scout leader who will come to our house to start him in the program. We will get him the shirt and book, I will try and stay out of it, but it sounds fun even to me. One of his leaders brought over his Pine wood derby car. He and daddy already scanned the Internet looking at ideas. He can't wait!!! 
There have been so many helping hands for meals, help with the girls, special treats, cleaning, dates to help the girls feel loved.... The list is endless. I have had to readjust our freezer situation to have enough room for all the amazing meals. Maybe I am a terrible cook or maybe it's because I didn't have to make it, but everything tastes really fantastic. 
We could easily be overlooked or even be so hard to accommodate because of our situation. Instead we feel included and loved. I am so thankful for inspired and wonderful people. Thank you for taking the time and energy to help us. 
My two sweet friends Jessica and Natalie even made my dream thank you gifts for our hospital friends.
Tomorrow is another clinic day. I am getting pretty good at driving around and not getting lost. I am really good at getting lost. Even in the grid system here in Utah. I usually take the exact same route and try very hard not to deviate at all. But surprise myself when I make it safely to the hospital, when I have had to change course a little. Gator loves to listen to talk radio in the morning on our way there. Funny kid. 

Alex's check up was awesome! We even got free Panda Express. Everything went great.. Biopsy Monday. 

Saturday, February 21, 2015

Going Smurf status

Talk about a creative medium. Let's paint our hand, instead of paper. She looks upset because I told her it would eventually come off. That it would most likely get into her food, on her face, on her clothes.. 

I guess in her mood she proceeded to paint "stormy sky" which proudly hangs for all to see. Therapy painting needs to happen more often around here I guess. 

This guy came in the mail today... Isn't he so cute. It is incredible the talent that people have and are willing to share. We love him!! 
Everyone seems to be doing well. Alex has had such a great time being home. 

We have some calf news but we are waiting on the last little girl, then I am posting all of their little pictures. Thanks Farnworths for letting us be a part of something so fun.