So much harder

If you've had the pleasure of speaking/texting/emailing me lately, you probably are wondering what got into me. I'm moody, mean, hateful, cranky, emotional, sappy, etc. This is NOT me. I am not myself. I apologize. This surgery is hitting me really hard. 

I'm not sure if it's because Amelia is older and I know this will be harder on her. She won't be able to be held for a few days because she will have an external drain coming out her head. Until that is removed she can't be moved. That is going to kill her and me. I hate that I'm not going to be able to comfort my little angel. Sleeping is going to be horrible. We have a monster that will only fall asleep when mama is touching her. 

I know when we have to hand her over to the nurses she is going to cry. She is going to scream when they walk away from us. I'm going to cry. That will break my heart and the next few hours will be the longest. Sad thing is I can't even pick her up and cuddle her when we get to see her. 

Maybe it's so much harder because we were thinking that this would be the final surgery until her permanent plate would go in 6 mos to 6 years later. Now we find out there will be more and taking that in is too much right now. 

Even though it's hard for me to admit, I'm not okay. It seems like everything is going wrong at once. She isn't making any progress and is regressing in her leg tone. She is having to get AFOs now. Therapy will be increasing to try to help more. I feel like I'm failing Amelia by not doing more for her. My two people that I have leaned on the most can't be here physically for us (one is ill and the other had work emergency that she couldn't leave) so having to go through this alone (besides Matt) is making my heart hurt. So again, I apologize if I've offended you in any way lately. I'm battling a demon right now. I do think that it's time to see a doctor and once we are given the clear to be out I plan on finding one and making an appointment. Until then I will try to plaster a smile on my face and be pleasant. 

Reconstruction part I

I know it's been awhile since I've last posted and I apologize. Actually, I have written a few posts, but they won't be published. I needed to get my feelings and thoughts out and didn't want anyone to take it the wrong way, tell me I'm looking for attention, feel sorry for me, tell me everything is fine with Amelia or tell me I'm ungrateful. So the best thing to do was to just write it out and leave it there. 

So we got the news from Amelia's PS that surgery will be in 5-6 weeks (this was weeks ago, lol). He said he was going to put in a temporary artificial plate and eventually she will need a permanent one. It is a strong plastic (some big word I forgot), the same that is used in knee and hip replacements. He is using this because the body is less likely to reject this. With our track record we will be praying hard that her body doesn't reject this. He will track her growth and then when he feels she is ready she will have a permanent one put it. This could be 6 months or 6 years. It will depend on her body and her body's ability to accept this plate. 

We were relieved to get this part going. I even thought that I would go back to work since she will have a plate, and I was going to put a whole bunch on my plate to make it work, but I was going to do it. Well, never, NEVER, tell God your plan. He will just laugh and laugh at you. Obviously it was His plan for me to stay home with Amelia for a LONG time. I just hadn't seen it that way...yet. 

We couldn't schedule surgery till we met with her NS the next week. We got a phone call the day after seeing her PS that she needs to come back. I was freaked out. Basically the nurse told us that he was going to have to do something more and on the left to her head and he wanted to discuss this with us so that we weren't blindsided surgery day. Since it's a long drive and she already had a bunch of appointments we opted to just speak with him surgery day. 

We got in to see her NS (which by the way, I LOVE! In 15 minutes we were signed in, taken back, vitals taken, met with the NS and were waiting to schedule surgery). It was there that we were hit with the bomb. Because she was unable to wear a helmet and her head was not able to grow properly and symmetrically, they would have to basically break her entire skull and reconstruct it. Her NS didn't think that her PS would start the process this young and thinks that she will have a few more surgeries before her final plate(s) will be placed. My heart just broke for my little girl  So we went from accepting that she will need 2 more surgeries (not including any for shunt issues) to possibly around 5. AHHHHHHHHHHHHHH

I can't even begin to tell you the emotional roller coaster I have been on. I have had my highs of hoping that she would be able to start actually recovering and maybe we can really move forward with therapies. To an extreme low of hurting so bad that I couldn't make it through an hour without crying.  I have even thought about the fact that these surgeries will be taking place while she is in school. That means she will be bald, scars all over, already not like the other students. So I went from saying I would NEVER home school because I want her to have the social interaction and the resources I can't give her, to saying, hmmmm maybe I need to home school till she is ready and out of surgeries. 

This surgery, just like all the other surgeries, will require around 7 days in the hospital and then a few weeks of being isolated. So you can see how being in school wouldn't work. She can't miss a month of school multiple times. 

This surgery is a week from today (I told ya'll I am really late with this). May 4th, aka Star Wars Day. Her surgery is at 1:00 which totally stinks because she will not be able to eat after 5 am. I am NOT waking her up at 4:30 to eat, so I have to deal with a cranky, hungry little girl. 

Please pray for all 3 of us. Pray for both surgeons and their staff. Pray for everyone else who is praying for this little girl. We know that God has some big plans for her and even though we have strong faith, it is never easy to see your child, a child you prayed for for 12 years, to go through.