Monday, August 06, 2012

Five Years


I've been thinking a lot about Noah lately.  I can hardly believe it's been five years since we had to say good-bye to him.  Somedays I wish more than anything I could just wrap my arms around him if only for a few minutes.  His smile still warms my heart and some days I can still feel his little hand in mine as we would walk hand in hand.  I still miss him everyday....I love you, Noah and I miss you so very much!

Time for an Update

It has been a long time since I have updated my blog! I read my last post from last October and figured it was time to update those that don't read my facebook! We ended up spending 74 DAYS in the hospital last fall. We went in on August 21st and came home on November 1st. This last year has brought many changes in our life. Lauren walked into the hospital last August and we rolled her out in a wheelchair. We came home to a hospital bed, a wheelchair, a walker, and a potty chair beside her bed. We had to convert our garage into a downstairs room, turning it into a big room for the kids, with the storage room off to the side into Emily's bedroom. We built an art space for Lauren (with doors on it at Mom's request :) ) so that Lauren would have a space to work on her endless art projects. We found at that visit that after doing numerous testing that the reason Lauren could walk one day and then not the next was from a chronic deterioration of the nerves in her body along with some of the muscles. The biopsy showed that it wasn't acute and that over the years, some of the nerves had deteoriated to the point that it just overwhelmed her system. She began by not being able to feel her feet, and in the last year, the numbness has moved up to right under her hip! We have done everything humanly possible to figure out what is causing this on top of her GSD. Dr. M now, along with many other doctors, believes that she has a second genetic condition on top of her GSD; however, they do not know what it is. The pediatric pain team has been involved with her care for the last year and regulate all her medications to help her get the best possible pain relief. Some days she can't even get out of bed. We are learning to appreciate the good moments and get thru the not good ones the best we can. Lauren's faith is amazing and she continues to amaze us and the doctors with her amazing courage and faith. She had the opportunity back in March to speak at the Stake Standards night on faith and overcoming challenges. She spoke to a group of around 700. It was a very spiritual and uplifting experience to hear her share her faith and watch as she was wheeled onto the podium to speak. It was touching for Jeff and I to see our stake president kneel beside her and hold the microphone while she spoke. It was a tender moment of love and service that we hold dear to our hearts. This year we have faced having to have not only a j-tube for Lauren to feed her thru her intestines but she is now also hooked to an IV 24 hours a day to help maintain her bloodsugars. It's been tough for her and for us. We have prayed and asked the Lord to help her regain the use of her legs and prayed for answers on what is causing her health to decline. Jeff has given her blessings and we have petitioned the Lord thru fasting and prayer. I remind her often to read her patriartical blessing and remember the promises the Lord has given her. She is making some progress these days; however, she has right foot drop so bad caused from the peripheral neuropathy that even after several procedures, it is looking like surgery will be our next option. They will go in and cut the tendon and ligaments in her ankle to stretch them so they can improve the foot drop. She is nervous when we mention it but we are trying to prepare her. They have decided she needs to have some more independence with mobility so they brought out different motorized chairs and scooters for her to try. We have settled on one that will meet the needs that she has and she is happy about it. It will be a couple of months before we get the chair between getting approval from insurance and getting it all in order. We recently bought a van and now will have to have it upfitted to fit the new chair. Even with all the major changes and challenges, we have found overwhelming blessings thru it all. We were able to do the room addition thru the Cap-C program and recently found out that we also can upfit our van thru the Cap-C program as well. It will be a huge blessing for us again. Michael spent a few days in the hospital last week as he got a stomach bug and we had to rush him in and he was admitted for a couple of days until he got better! In the midst of all of this; however, we are finding that we see the Lord's hand more clearly and are trying to be more obedient and faithful. We have been able to get nighttime nursing care for Lauren five nights a week from 11 to 7 and on Friday nights we got help from 7 pm to 7 am which allows Jeff and I to attend the temple every Friday night. It's been the biggest blessing of all! Jeff stays busy in his calling on the high council and Emily attends the singles ward. Since they meet later in the day it allows me an opportunity on most Sundays to at least attend Sacrament meeting for which I am grateful. Mornings are not good for Lauren so it's rare that she gets to attend church. Her young women's group are wonderful and they text her and send cards often. They will be coming here this Wednesday night for an activity just so they can be with her. It's so great to see the love and bond she forms with her YW group. Emily has had a great first year of college and excelled in all of her classes. She will have one more year to go and then she will be a licensed massage therapist. She is excited and her dad expects to be one of her first patients..haha! We are very proud of her and all her hard work. Michael starts highschool this year..sniff,sniff...not ready for him to be so grown up! We think of and miss our precious Noah everyday but often feel his presence and know he is with us. I went thru a bout with pneumonia in March and it took me EIGHT weeks to recover! Part of it was because of my stubbornness in not slowing down but I felt I had so much to take care of there was no time left over. Getting up every 4 hours to take care of Lauren's needs, cleaning the house, cooking, doing laundry, teaching seminary, and trying to find ways to serve others finally took it's toll on me. I FINALLY rested and got better and now I pay more attention to when I need to rest. Having the five nights of nursing care has been a wonderful help! The Lord continues to pour out blessings to us! This has kinda been the last year in a shortened version..we have had many ups and downs, disappointments, and triumphs but overall we are weathering the storms and will come out on top! To all of you who have prayed, fasted, and put our names on temple rolls...thank you! We love you so much! This year on our annual vacation it was particularly hard as we faced new challenges with Lauren and it was the fifth anniversary of Noah's death. Somehow, it was harder for me than usual. My wonderful husband gave me strength as always and I enjoyed spending time with my extended family! Life, for the most part, is good and we continue to move forward with complete faith in the Lord's plan!

Still here....

I can't believe it is October 8th and we are still in the hospital. So many unexpected things have happened this hospital visit. Lauren has had some HUGE obstacles to overcome and I am wondering if things will ever completely return to normal. She is still not able to put any weight on her fegs as the pain from even walking a few steps is enormous and then she becomes very unsteady and her legs give way underneath her. We are getting somewhat of a handle on the stomach pain and are able to slowly begin her feeds again. While we seem to be getting on top of one problem, the one with her legs seems to be getting harder and harder. We still have not heard anything back from the nerve and muscle biopsies (not that I am holding out much hope for answer there anyway) but it would be nice to know if there was anything at all there that could point them in the right direction. At this point, they are just trying to help her deal with the pain and get her back on her feeds so we can go home (hopefully that will happen in the next two weeks if all goes perfectly as planned!) They aren't even trying to figure out the leg pain at this point or I don't feel like that is even something they are concentrating on. All they tell me is that it is some type of neuropathy. They haven't been able to tell me what caused it or if it will get better so we are left with no answers there. We will likely have to go home with a wheelchair for her as well as a walker as we work toward getting her to be able to walk on her own again. She has been very discouraged (obviously) and I hope that things will improve once we get her back on her feeds and home again. I hate not having a clear plan or answers but I am trying to learn to be patient as we seek the Lord's direction. My heart just feels so heavy right now even though I am trying to do everything I can to be obedient. I know things will get better.....I just wish they were getting better now! I just miss my family right now and wish Lauren and I were back home. There have just been too many twists and turns in the road for me lately.

Tuesday, September 06, 2011

Crazy week.....

This past week in the hospital has been crazy, crazy, crazy! Lauren came in 2 weeks ago with a bad migraine that radiated to her stomach. She was put on an IV to rest her GI system and they tried out different things to relieve her migraine. They decided to try her on Topamax (a medication to help keep her from getting migraines so bad). She was started on the medication last Saturday...by the next evening she was so dizzy that she could not stand! All last week, she had to be helped to the bathroom and had to use a wheelchair to go anywhere else. The dizziness also made her very nauseous. I finally convinced the doctors (since Dr. M was out of the country) to take her off the new medication. They did on Thursday and I hoped her dizziness would improve...it did not. They called in Neurology to try and help us figure out what is causing Lauren to be so dizzy. I got frustrated with them over the week-end and was elated today when Dr. Muenzer got back into town! He met with the neurologist and her GI doctor to discuss what is going on with Lauren and what they can do. The neurologist told us that Lauren doesn't have any sensation in the bottom of her feet and they want to do more testing to see what might be going on. She had an MRI but it looked normal (thank goodness). They still need to figure out what is causing Lauren to be dizzy...I am still not convinced that it wasn't the medicine and it is just going to have to work it's way out of Lauren's system. At any rate, everyone is putting their heads together to figure out how to get Lauren thru this and back to normal. We have already been here two weeks and I fear we may be here for a couple of weeks longer given what is going on. I am hopeful we will get to the bottom of this quickly though and we can go home very soon! it has been crazy around here though the last week or so and seeing Dr. Meunzer today was like manna from Heaven for me! Hopefully they will be able to get to the bottom of what has been going on with her so we can get it resolved! Life keeps us hopping all the time!!!

Sunday, August 28, 2011

Back to our second home.....

Even after all these years of going in and out of hospitals, I still don't like to work hospital visits into our life when I am planning for a school year or just putting us on a schedule. I should though...because we are always coming in to the hospital and if I put a plan together for when we come in then it would be easier to deal with. I actually tried to do that this time. I feel like I am in a better place because of that.....hospital visits are still not fun and I STILL wish that we could actually come in to the hospital and leave in a reasonably short amount of time but I know that is not the case so I tried really hard this time to plan for the actual time that we will be here. Planning to stay a long time does not mean by any means that I want to be here that long but it makes me not get so anxious as the days wear on. Lauren has been doing AMAZINGLY well this hospital visit but today she is starting to wane a little. They have not been able to get her migraine or stomach pain under control and that is proving to be wearing on her some. She knows it will get better...she just doesn't know when and that can take it's toll. But...she is trying to stay optimistic about it and that is half the battle! I love my family for their patience as we trudge thru yet another long stay.....we will get thru this one like we have all the others...with love, patience, and faith!

Wednesday, July 20, 2011

Grown up!

I have been thinking the last 2 weeks a lot about how fast time is flying by! My kids are all growing up faster than I would like and seeing Emily entering college and going off to Institute each week is making me feel like "where did all the time go?" I didn't realize until recently one day when I was looking at Emily that she is all grown up! I'm so proud of the beautiful, spiritual, well rounded young woman she has become. She reminds me so much of her dad in her quiet, gentle strength. There are so many things that I want to make sure she understands and knows and I wonder if we have instilled in her all that she needs to be successful in life. I remember when she was born and I would wonder what it would be like when she graduated from highschool and now that I am here, it seems like the years went way too fast. I think about those years and a big part of me wishes I had them back and wishes I could have done some things much better but I am so thankful she has turned out so well! In one week Michael will turn 13 and I will have all teenagers! Life continues to move forward whether I want to stop it or not and I hope and pray that we can continue to teach our children correct principles and that all of them will one day be able to govern themselves and be the righteous, faithful adults we are trying so hard to send out into the world! Emily is now beginning adult life and I am so blessed to be able to say that we are sending her out into the world with a firm, unshakeable testimony and a strong desire to do the Lord's will in her life. Her roots are planted firmly in the ground, now it is time for me to let go and give her the wings she so richly deserves!!!

Sunday, July 10, 2011

4 Years!

It's been 4 years since I had to say good-bye to my precious little boy. I still miss the sound of his voice and I miss him everyday! I wish I could see him....if only for a minute.



Sunday, June 19, 2011

Sometimes....

Sometimes there are no words to express the feelings in my heart....there are many times I experience things while Lauren is in the hospital that squeeze my heart and bring me many tears but I rarely share those times....sometimes because they are sacred, sometimes because they are too tender to share, and sometimes there is no way to express those feelings in words. I oft times use too many words and I think about Noah when he would say, "no more words, Mommy"...sometimes, we just have to trust in the Lord and walk forward with blind, total faith. Those times are hard and each step is painful and at sometime in the future, we will understand.....but for now there are no words.....

Thursday, June 09, 2011

Emotional....

I know we come to the hospital a lot and I am grateful for all the love and help that we receive from so many, especially everyone on 6 childrens at UNC Childrens. They are wonderful and amazing and my heart is always touched by their outpouring of love and attention to Lauren. I am also very thankful for her fantastic doctor who fusses over her as if she was his own..they are true blessings; however there are also reasons why I HATE coming into the hospital....it always stirs up painful memories for me. I do not like seeing my child in pain and having to watch that process and feeling helpless is very hard for me and the pain of losing Noah always bubbles right back up to the surface and my emotions can easily erupt...I hate that! I try so hard to keep everything in perspective but there is always that moment when things are calm during the night that the tears come and the pain returns. I deal with it like I always do but somedays, like today, my heart feels tender and as I look at other little ones on the floor, I long to be able to hug and see my little boy. It's just a wish and then I manage to tuck the pain back inside and move ahead again. Hospitals bring out my emotions and I don't always like having to deal with them while I am trying to get Lauren better. I'll be glad when we are finally able to go home again!