Saturday, October 29, 2011

Our Journey to Transplant

On Wednesday October 19th Pittsburgh called me and told us they wanted us to be there on that following Monday at 8am. My response was "in like 5 days? Why???" Well after many phone calls we found out that there was some new info they wanted us to see and wanted us to see the transplant team also.

So of course we rearranged our schedules and went. Here's the short version of what we were told. Kids that still have stable but high ammonia (Like Lynlee in the 60's) are showing long term brain damage and/or delay. They also have an average IQ of 75. This scares us! It scares our doctors, and it scared the transplant team enough that they are on board with transplant now.

We left there with a huge decision to make. This decision will change our lives forever. There's no going back after a transplant.

After days of praying for guidance, thinking it all through, and rethinking it we made our decision. We want Lynlee to have the most normal life she can. We HAVE to save her brain. I don't think I could live with myself if she would become mentally challenged because of a decision I made.

So yesterday she was listed on the transplant list. She went on with 30 points. She wouldn't be the first person to get a liver that low on the list, but it's very unlikely. In 30 days we will be bumped up to a 1B and things should happen faster. Most kids have a liver within 2 months after they moved up.

I feel very calm and satisfied with the decision that was made. I know we made the right decision for Lynlee. A decision we can live with. I've very thankful we had a decision to make. We could have walked in there and been told this is what is going to happen to your daughter and you deal with is. But we weren't. We have a choice, and I thank God every day for that.

So now we wait. Wait for the phone call that they have her perfect liver. I'll try to keep everyone as updated as I can by the blog. We welcome your thoughts and prayers and your positive outlook.

Wednesday, October 26, 2011

Wordless Wednesday: Pumpkin Carving

Until last night I've never carved a pumpkin.
 Ryan thinks I'm Un-American! Maybe I am.
 I didn't really love it? In fact, if I never do it again I'm okay with that.
 But Lynlee seemed to enjoy it!

Okay now on with Wordless Wednesday:

Thursday, October 20, 2011

Look who's two!

My baby girl is two.

 It feels like just yesterday I was holding her in my arms for the first time.

I never take a day with her for granted!

She makes me smile and laugh every single day!

Keep on growing baby girl!!

 I love you more than words can say.

Wednesday, October 19, 2011

Tuesday, October 18, 2011

And the week begins.......

Yes, it's a big week in the Arbogast household. If I make it through the week without having a meltdown it will be a miracle.



                              
                                          The princess relaxing in her new chair

It's no secret that since Lynlee had a cold a few weeks ago (more like a month ago now) and we put her in our bed it's been a struggle to get her back out. When we almost had her out we went on vacation and she spent the week again in our bed and it's made the transition back almost impossible. Ryan had the idea a few days ago that Lynlee's crib is just uncomfortable. So we went and bought an eggshell and cut it to fit. It did help some. On Sunday night at bedtime Lynlee came and got me. She asked to be put in her bed. When I put her in there she asked me to lay down with her. Of course I couldn't. Then she went and got Ryan and did the same thing. It broke my heart! We knew it was time for a big girl bed and also we had high hopes that instead of her wanting in our bed during the night we can just lay beside her and get her back to sleep.  The first night was huge success. I was secretly hoping she would want me to sleep with her all night, but she didn't. She woke up once and was back to sleep within minutes, and slept til 7:30am.



So not only is my baby turning 2 in two day she is also in a big girl bed.

Speaking of the big birthday, I don't know if I'm ever prepared for it. I don't know if it's a mom thing or if its just what we've been through but it's always emotional on me. The memories of those first few days/weeks are there. No matter how hard I fight it the thankfulness that she is still here just overwhelm me and birthdays are just so special to us. Because I know I could be morning the loss of a child instead of celebrating the life of the amazing child we do have. I'm not sure if this will ever get easier. She will probably be turning 23 and I'll still be blubbering about this.

Last year we had a huge party, but this year we are taking a different approach on it. We have 3 sets of grandparents so we decided it would be more special for each to have their own special party and their own time with her and the rest of the family. This sounds really sweet but it's also a lot easier on both Lynlee and me.  (ha ha)

So we will be back later on the week. Possibly with lots of tears, but also with lots of pictures :)

Friday, October 14, 2011

Barney Love

Do you know that you can't find Barney stuff anywhere!! I did find a Barney DVD 6 pack at Wal-Mart and was super exicted. This week Aunt Erica brought Lynlee a Barney and Baby Bop that her little sister used to play with. Thanks Aunt Erica and Thanks Tosh for letting Lynlee have these!! She loves them!


Wednesday, October 12, 2011

Sunday, October 9, 2011

Vaca and updates

When people start asking me why I haven't been blogging I realize it's been too long! Sorry!!

The week before last we went to Gatlinburg for the week for a small vacation. It was my first time there. I loved it there. The only two things on my to do list was to take Lynlee to the Aquarium and to shop at the outlets! Both were accomplished!! Our hotel was short of amazing. With an indoor water park who could complain! So from shopping, site seeing, riding go carts and eating a whole lot we had a great week! Enjoy the pics!!











This week has been pretty busy. No pictures of the festival but Lynlee enjoyed lots of people watching and the crafting is still up in the air! HAHA..

We did an ammonia on Tuesday. I was so thrilled for a 43!! We aren't scheduled to go back to Pittsburgh until November 8th.

Other than that things are pretty much the same thing around here. Lynlee would watch Barney from the time she got up til she went to bed if we would let her! We are still working lots with her speech! I'm still shocked I have a child that doesnt' talk alot? HAHA..

We will try to blog more often! I hope to be back with Wordless Wednesday as soon as I start taking some pictures!