2/19/16 Me and G-ma at Disneyland - Posted by Emma

                             Getting off Car's ride at Disneyland.

                                 At the Lego shop  with G-ma.

                                    At Rain Forest Cafe.

                                    Hi G-ma!

 

-Make a Wish-

                                                Headed to the hotel.

2/19/16 Sisters- Posted by Emma

           General Conference

       In a Bug's life with Alyssa

                                          Aloha.....In CA

     Kaila pushing Me and Tessa

   Sierra and Me on the Ariel ride.

2/19/16 Pageant Posted by Emma

                                                    Pageant!!!

2/19/16 Posted by Emma

                                  Me and Char

                                 Me with baby Brigham.

2/21/16 Merry Christmas - Posted by Emma

                                                

                                      Reading along with G-ma

                                               

Makinking cookies.                                                                                 

Tap dance

2/19/16 Posted by Emma

Kisses to make it better

2/19/16 Posted by Emma

         On a Merry Go Round

                                                      small world after all

                                           

                                          happy b-day.

5/13/19

Today was Emma’s post Op appt and of course I left my phone in the car and couldn’t take any pictures but will next time. Here’s a few from the last week. She had xrays done and we got to see the before and after(another picture I would have loved to take) Her upper spine is now at a 0 degrees and looks awesome. It was almost at 70 degrees. There is a lot of metal in there. The lower spine now has a bit of a curve from rotating the upper spine but it’s not significant enough to do anything and we will just  keep an eye on it. The important part is the portion of her spine that could negatively affect the heart and lungs is fixed! She is off of her pain medication and is continuing PT at home. The muscles in Her scapulas hurt the most now but the Doctor said there are 27 in there that were moved so that will take some time to heal. She can go swimming in a month and is super exited about that which means she’ll be all set for summer. It’s amazing how resilient she is. I’m still traumatized by watching all she had to go through but she’s not looking back. It’s been such a blessing to see how loved we are! Thank you for all your love and support through all this. I think the worst of this issue is behind us and excited for what’s to come!!!

5/2/19

Emma continues to progress daily. She still doesn’t tolerate the pain if her medication begins to wear off which worries me but we have lowered her dose so that’s good.  Some days are better than others but this is typical for her regular everyday life with her other medical conditions. I’m so proud of how she pushes through the pain to do her PT. 

She's been so happy and positive through most of this. A few nights ago she had a bit of a break down. She said I think I needed to just cry. She said it's hard to not be normal😥 so we talked about that. She's back to her happy self. 

Getting cards, presents, phone calls, and visits has been a huge part of helping her stay positive. She is social and loves people. She gets lonely easily so thank you for all the support! 

She's getting stronger everyday . She still has a lot ahead of her but I’m not going to update as much. We are trying to get back to some type of normalcy. Right now we are playing a lot of catch up. A week in the hospital and now trying to take care of her needs and the rest of the household leave little time for much else. I’ve learned life doesn’t wait for you to catch up. It just keeps going on without you when you have a crisis. That is why we are so grateful for all the help as we’ve navigated this new obstacle. Times like this  truly bring perspective. It’s such a blessing to see that we always have friends and family to help see us though. It strengthens my testimony of how the Lord will always bear us up and help us to handle all that he asks us to go through. I’ve been so lucky to see how strong my family is as they step up and help. I know I’m never alone. I know that when we ask the Lord will comfort a broken heart and help our unbelief. Thank you all for being apart of my team. 

I will continue to use this site to update on her progress any medical issues that arise in the future. 

4/27/19

From FB: Nights have been a little rough but the morning always comes. She cried herself to sleep but got up this morning ready to conquer the world. Already did her morning walk. It’s feels so good to be home and she’s making progress daily.’

This couldn’t be more true. Each time I think, ‘this is to much’ once the moment or night passes the next day the sun is shinning even brighter. She’s having some really great days. Tough moments for sure but making wonderful progress. She’s really making progress in what she can do for herself. She can now use the restroom by herself which she was thrilled about. 

This day was our ward party and she couldn’t go of course. Matt had work and I felt like I needed to be with her although my oldest girls have been amazing to give me breaks. Our sweet friends let Alyssa, Tessa and Matthew tag along with them for the night. Emma was sad she couldn’t go but after the party a few girls came over and spent some time with Emma. This made her so happy and made it all better! Look at that smile! 

4/25/19

I haven’t been able to update since things really started getting hard and part of me didn’t want to so I just said what I could on FB. 

April 25 - This was my FB Post, ‘Little bit of a set back today from nausea making it hard to get out of bed but look how well she did yesterday! They may still let us go home today!’ I tried to sound brave and mention the good from the day before but this was the worst day yet. She had a horrible night and threw up twice that morning. The problem with this was 1- it was painful to throw up, imagine all the back muscles that have just been manipulated trying to work to throw up and 2- we couldn’t keep the pain medication down so she was feeling everything. When PT came that morning she couldn’t get out of bed. When they came that afternoon she mustered up some strength to walk down the hall and back which she had done 3 times the day before but this time without pain medication and now feeling nausea. IT BROKE MY HEART! This was the day I wanted to break but she wasn’t so how could I. The day got worse ...when they finally released us it was 5 o clock traffic in LA but I knew if we could just get her home we could get this all under control. Hospitals are the worst place to get better. She was in so much pain to even get out of bed and somehow we got her in a wheel chair, out to the car and into a seat. We tried every way to get her comfortable. We drove about 10 min and had to stop. Matt pulled into a little market and ran in trying to get something she could stomach to try and get her muscle relaxers down. I was sitting there feeling so helpless and she kept saying, ‘I don’t know what to do.’ And I thought, ‘I don’t know what to do!’ but I did. I prayed. I prayed so hard to know what I could do. I moved the car so I could open the doors which was funny because Matt couldn’t find us when he came out. It came to my mind to know how to adjust the seat and the pillows just right. Matt found us and came back with some foods that sounded appetizing(the hospital crackers didn’t even have salt). She had some saltines and a few sips of soda. She took her pill and we waited and breathed watching the traffic get worse as it passed by. We all took a deep breath and when she said she was ready we started up again. It doesn’t help that on top of all of this she gets car sick easily . We made it about 45 min down the road and had to stop on the side of the freeway and readjust pillows again and take a few more deep breaths. We made it back into that heavy traffic. It took us a little over 2 hours to get home. There were 4 accidents on our way home. I felt so bad that by the time we got home we were all so exhausted that our welcome party didn’t go as the kids had planned. They had spent the day with Grandmas help deep cleaning the house, making treats and decorating. Everything sparkles when we walked in. There was a big welcome sign in chalk on the walk way and one on the sliding glass door. The table was set for a celebration. Emma’s eyes lit up through her pain and I couldn’t have been more grateful for their goodness. I am so deeply blessed to have such good kids that love each other. I kept thinking I couldn’t have done this without them. She had to walk into the house because it hurts to be held. Her room was all set up so perfectly. The kids moved a TV and recliner in there for her.  She tried to lay in the bed but it hurt to much. Again I prayed. What do we do? We got her into the recliner and padded her with pillows. Everyone took another big breath. She was able to get some food down and then the pain pills. Finally she felt some sense of relief. This is when she said to me, ‘this is the best/worst thing I’ve ever chosen to do.’ And she meant it. As she’s gotten older we’ve let her take a more active roll in her health care. I was so grateful to hear that she did actually feel like this was her choice. We had told her why she needed the surgery and how hard it was going to be and she wanted to do what was best to keep her from getting worse. It was another really long night. Each time I’d start to fall asleep she would ask to be adjusted again. Finally about 3:30am she settled down and slept for 4 hours! 

She also kept telling me how proud she was of herself each time she could do something again she hasn’t been able to do.

4/24/19

She did it! Emma started physical therapy yesterday afternoon and did so well. She was able to with assistance sit up, get out of bed and walk to the door and back to bed. She was so worn out after that she slept the rest of the day and most of the night. We were moving her every few hours and she would wake up when the pain was bad but once we’d get that under control she would fall right back to sleep. This morning she finally ate again and kept it down. PT came this morning and she was able to repeat what she did yesterday plus make it to the toilet(I say toilet because there is literally a full on toilet that come out from under a little sink) and all the way down the hall and back. She asked if she could please stop and not do it but once she knew it would help her get home she would push herself through the pain. I was so proud of her. They took out the Foley and morphine line and she’s just on oral pain meds which she seems to do better on.

She said that each time she falls  asleep that when she wakes up she feels a little better. We are hoping to be moved out of the ICU today and onto the main floor. Step by step! 

4/23/19

It was a long night for both of us. The anesthesia started wearing off so the actual pain was really manifesting itself. She felt so good after surgery she kept saying she was fine to go home today and we even played a game of clue but as the anesthesia wore off it all came on. She’s been able to keep it under control with the morphine which she has to use each time they rotate her. We were up every few hours for that. 

We saw the surgeon this morning and he reiterated how pleased he was with how well the surgery went and discussed how the next few days will go which doesn’t sound very fun. She will start PT this afternoon which is where the hard work really begins. She wants it to happen though because she said it brings her closer to coming home. We’ll see how she feels about it after. 

As we’ve been rotating her I’ve been able to see her back better and shoulders and have been surprised at the difference. At first she kept asking to be moved because she felt like she was sitting crooked but it’s because her spine is straight now that she feels off. Pretty crazy how our mind can control how we feel. All of her muscles are adjusting to the change as well and she keeps saying shes feels sore like she’s been walking all day. The spasms have started today and they are giving her muscle relaxers for that. 

We just met with PT and they will come back this afternoon to start therapy. Because she had to be given more blood they gave her allergy medication so between that, the morphine, and muscle relaxers she’s pretty out of it. She keeps waking up periodically and saying funny things. She just told me a funny knock knock joke and then went right back to sleep. Praying PT goes well this afternoon. One day at a time! 

4/22/19

Emma went back for surgery shortly before 10. We had to leave at 5 this morning which meant we were up at 4. We got here around 7 and then waited...theres always waiting and waiting. Once she was admitted the process to get her ready began. Emma hates IVs and it’s always the worse part for her. They were able to get it in easily but because it’s in her hand it hurt and continued her to hurt. I’m glad she’s asleep now and can’t feel it. Each of her specialist came and talked to us and assured us they are going to watching their area to make sure it stays stable during surgery.  There was pulmonary for her lungs, EP for the pacemaker, cardio for her heart, etc. When they finally took her back it happened quickly. That’s how it works, always hurry up and wait. There’s been so many doctors appt and so much anxiety leading up to this I can’t believe we are finally here. It’s strange that this shouldn’t feel so big compared to all that she has gone through but it is. Like I’m always telling others moms when they say how hard it is when their kids are going through something they deem ‘nothing’ compared to what we’ve gone through with Emma, ‘When it comes to your kids, no matter how big or small the pain or heartache is, it’s pain and it’s hard and it hurts the same.’ 

This week has been hard to have to hear all the things that can go wrong, all the possible complication from each of her doctors. So now we sit and wait and pray all those things don’t happen and they can do their jobs the best way possible. It’s horrible to put your child’s life in the hands of others when you are the one that’s suppose to protect and take care of them. 

I’m so grateful for the comfort that come through prayer and knowing we aren’t alone in this. Yesterday was such a perfect day to prepare us for what’s ahead. Thinking about our Savior who suffered all and lived again so we don’t have to suffer alone. Thinking about how He asked if the cup could pass from Him but was willing to do what had to be done for us. I was comforted to know all the that we go through will work together for our good. What a blessing it has been to watch my family pull together and be there for each other. It’s humbling to feel the love and support of all of our family and friends. It’s an honor to see my little Emma inspire me with her strength. 

We’ve only had one update and it was that all is going well. The surgery will last at least til five so I’ll update when we hear anything. 

4/19/19

Emma had a spinal MRI on Tues. I got a call from the neuro surgeon Wed that they found an abnormality on her cervical spine.  Her top few vertebrae are deformed. It’s called Basilar Invagination: ‘a relatively rare condition in which the upper portion of the second cervical vertebra migrates upward and posteriorly into the intracranial space.’

She said we needed to go get xrays done that day to be able to clear her for surgery as this conditions adds new risks to it. Emma was so unhappy that she had to go to another doctors appt but she was a good sport about it. I got a call today that the xrays confirmed diagnosis but nothing worse so the doctor was able to clear her for surgery as long as they are aware of and make adjustments with this new development but we’re good to go. What a roller coaster! Emma asked me last night, ‘I don’t have anymore Doctors appts until my surgery?’ I said nope but your realize your surgery is on a Monday, right?’ She said, ‘Yep!’ I’m glad that seamed far enough away that she can enjoy Easter weekend and that feels like a break to her. Hope you all have a wonderful Easter and we’ll keep up updated on how the surgery goes. 

P.S. This is a picture of Emma bringing me breakfast Thurs. morning. We had a long day Wed when I had to drive her to LA to get those xrays unexpectedly and then be back in time for YW mutual I was in charge. Even though she was tired she did this for me all on her own ambition. What a sweetie!  

4/15/19

On April 22 Emma is scheduled to have back surgery(spinal fusion, lumbar and thoracic) for her scoliosis. It has been progressing rapidly for the last few years and another 15 degrees just in the last 6 months which can eventually negatively affect her heart and lungs. She has been cleared by all of her doctors; pending a spinal MRI scheduled in a few days, to have the surgery. Their biggest concern is that because of her restrictive lung disease her lungs won't tolerate it well and she will have to stay intubated for a few days after or even longer. We are praying this doesn't happen because it will make her recovery even harder which is already going to be long and painful. There are other possible complication because of her heart disease but that wouldn't be any fun to discuss. Needless to say, back surgery is already a lot to put someone through but because of all the added risks due to her other health issues we are asking for many prayers in her behalf. We will keep you updated through this site. 

A few weeks ago Emma had to have a Cardiac Cath to be sure her heart would be able to handle this surgery and we received so much love and support that is confirmed what I already knew; that we have the best support system in the world! Family and friends reached out and were there in anyway they could and even after only living in Lancaster for the last 8 months we received an out pour of love from our new friends here. Thank you for your love for our family and the constant strength you have given. We love you!