Brown and Pink Polka Dots : We have oxygen

The past few days have been crazy!

Fri 12/21 I called special needs and asked them to figure out what was going on with the test results. Pulm got back to them and said they finally called the pulse ox place and that the pulse ox place said that the 11 page email was too big to send so they would need to figure out how to fax it. We got confirmation in the afternoon that pulm had it but they said they wouldn't have time to read the test. I cried.

Over Christmas Lydia was just exhausted. She would do something for a little bit and then rest. She opened a couple of gifts and then sign all done and lay down to rest. I tore my heart apart. I am sure the doctor probably thought she was giving us one last Christmas without oxygen but really it was a Christmas that Lydia struggled to be a part of and that was not fair to her. My eyes are literally tearing as I type about it.

12/27 I call back per special need's instructions (they said to call on Wednesday if pulm didn't call on Tuesday) and Pulm said they had not looked at it yet because they were closed on Tuesday and now had a backlog from the holiday.

12/28 I sent a message asking the ETA on the results and got a message back from the doctor that she handed the results off to the nurse and the nurse and home health company should be calling me soon. This told me she was going on oxygen but no idea how much or what the results said. I got that message as we were headed out the door to the hospital because the balloon on Lydia's feeding tube burst and the tube tried coming out. Lydia did two cycles of Azythromycin to try for gastric emptying. It did not work how we were hoping. First biggest problem was that it killed her feeding tube. We started having problems with her tube once we started using that med because it had to go directly into the g port of her tube. We started having extensions getting so stuck it took two of us to get them out. You could tell the plastic on the tube was becoming strange but then the balloon that holds the tube in place broke and it looked like when they took the tube out that it has eaten between the g and the balloon. The med also caused her to start pooping 7+ a day. She got to the point where she was just pooping acid and it was ripping her butt apart. It was causing her to pee more which was nice but it didn't really lower her g output by much. The small increase of urine didn't make up for all of the other side effects. So as I was getting into the car I grabbed the second regulator and another oxygen tank to bring with. I stopped at Starbucks on the way to the hospital to get lunch and the nurse called saying that the test showed that Lydia did need oxygen while awake. She asked what DME I wanted it sent to and I said VNA which is where Jilli gets her oxygen and we get both girls tube supplies. We then continued to drive to children's and got Lydia's tube changed and then came home because it was snowing.Once we got home I realized I never heard from the oxygen place so I called them and left and messae and they called me back and said they never got a script from the doctor. The doctor's office was now closed for the day so we just used Jilli's oxygen.

12/29 Pulm called me in the morning and said that they had sent the script and they called VNA and VNA would not tell them if they got the script or not but that either way they could not supply the oxygen because of Lydia's insurance. Apparently VNA lost the contract with our insurance and they can keep existing clients but can't take any new ones with our insurance. So the nurse sent the script over to the company that did the pulse ox study... ahhh!!!
For Christmas my parents got Jilli a dance lesson. A dance studio where my parents live said they would be happy to have Jilli come so my parents signed her up for a mini camp which is a two hour long class where they teach them a dance, do a craft and eat a snack and then at the end they preform the dance for their family. This is perfect for Jilli because a weekly class would likely be hard with appointments but as a one time thing this was perfect. It felt so weird for me to send her into a class without me. She did great. She did it in her wheelchair and she even advocated for herself when it was snack time that she couldn't have it (she said they asked if there was a nut allergy and she said she can't eat nuts so they didn't give her snack, which worked perfect, we have talked some about how we are not ashamed about what is going on with her health needs not that every person we see at Walmart doesn't need the full story either). At the end families got to go in to see their kid dance, it was cute! She was so proud. For the class it said to wear comfy clothes and she was thrilled that Grandma and Bumpa got her a full ballet outfit to wear.
After we did dance class I called the pulse ox place to see what was going on and they said they were working on checking our insurance and would get back to me. At 5:15pm I got a call that they checked and we do have insurance but that they needed a credit card from me to charge me $23 a month and I asked why because we have two insurances and they said they were not aware that we have two insurances so they took that info from me and then said that someone would be calling me to let me know what time it would be delivered that night. And then we waited... and waited... and waited. I tried calling back but it was then after hours. Eventually at 9:45 I decided to just go to bed. I had a throat and ear ache and was exhausted. As I laid down I got a call from the company that they had not left yet and would be here in 45min to an hour. So I got back up and waited for them. Then they called again and asked how old Lydia is and they said that the stuff that was put together for her is not for a kid her age so they needed to get other stuff together. It was around11pm when he pulled up. He brought everything in and set it up. He said he was getting ready to head home for the day and noticed that 5 orders had not be delivered and one was for a baby (Lydia) and he asked the guys that were still there who was taking the order to the baby and no one would take it, so he stayed late and brought it to us because he has kids and he couldn't imagine someone not bringing oxygen to his kid. He really wasn't happy when I told him that the order was faxed from the doctor at 9:30am and it took his company all day to figure it out. I am so grateful that he brought us the oxygen but the company let Lydia and the driver down on Friday. The added stress for everyone was not needed. It was after midnight when the guy left after getting everything set up and paperwork signed. There is still missing things and they are suppose to deliver those on 1/2 but we will see.

So now Lydia is on oxygen when awake and man have we seen an improvement. She is happier. She is babbling more. She is playing more. She is sleeping better even though she is not on it at night. She can stand for longer. We were with my parents this weekend for New Years and they commented on how different she is from over Christmas. I am in tears so thankful for her. For her being able to be a kid because she is getting the oxygen she needs. I know some people see oxygen as restricting but for Lydia it is making it so she can play and enjoy life. She is still adjusting to having the oxygen line and remembering not to get it caught on things but that will take time. She is doing a great job at leaving it on her face.

In other news, we did have a lot of great Christmas and New Years celebrations! It was great seeing people and spending time together. I am looking forward to a calm week this week after all the fun to organize and put things away! But we are thankful for the time we got to see friends and family!

5 and still happily riding rear facing within the limits! This pic is at a bad angle because it looked like the back should be higher but I promise its at the right height for her and she still has room to grow

Lydia sleeping in her comfy lift bed

opening gifts from mom and dad

it took her a bit to get into it but now any time she sees a gift she thinks its for her

For Jilli this will be known as the Playmobil Christmas

This was a treasured find at a little mom and pop store. It hasn't been made in years but was still sitting there new in box and it is Elmo and gears... two of Lydia's favorite things!

We had Bretn's grandpa and uncle over for dinner and Grandpa had sent some birthday money for Jilli and we used that to order a Playmobil set from Europe, the beauty salon... Brent's grandma who we all miss dearly owned her own beauty salon and would have loved buying this for Jilli and it made grandpa smile to give it to Jilli and it made Jilli smile thinking for grandma Jill... I think that will be one of the most special pieces in her sets!

Brent's grandpa's sisters sent the girls Christmas gifts, it was so sweet!

On 12/23 Jilli woke up with a barkey cough but nebs every 6hr kept her alright and by Christmas day she was fine

My friend Liz lives by Disney World and took me shopping at the outlet one day via facebook messenger and found these cute pajamas for Lydia... yeah for video shopping and friends!

Lydia and I in our Christmas eve dresses

Jillian helping Lydia brush her hair

In their Christmas eve dresses at my parents before church

playing the Rodolph board game

My parents started a tradition when we were very little that get got our big gift on Christmas eve and they have continued that with the girls. This year Lydia got a Bitty baby. My dad picked it out for her just like he did for me the Christmas I was 17mo. Lydia loves her new baby

Christmas pajamas!

Lydia should be sleeping... but cuddling her baby

:Lydia with her stocking

Lydia thought all gifts went to uncle Seth... even hers

Lydia loved the Sesame Street wrapping paper!

Lydia got big Bird shoes and then signed all done... she had her shoes, she didn't need anything else!

One tired girl during gift opening

Jillian and my cousin

Lydia sleeping during Christmas at my grandparents

Jilli's big gift from my parents this year was an Our Generation doll. It is a doctor. She LOVES it!

Jilli opening gifts at my grandparents

exhausted Lydia looking at her gifts while I opened them for her

Wonder Woman Jillian!

This is as good as a picture of the two of them in their Christmas day dresses got!

Jilli and I watch a Disney Vlog and in it they play the Disneyland Kenect game a few months ago so Jilli asked my brother for that for Christmas, so he gave her his old xbox since we don't have one and the game. She is so excited that she can go around Disney any time.

So then the adults took turns playing the different attractions and life became really funny. Here is Seth and Brent driving with their whole bodies.

Aunt Sandi doing Jilli's dolls hair

Uncle Tod and my mom playing with Lydia

Jilli's first Christmas Aunt Sandi wrapped her up and put her under the tree (she was just over a week old) and Jilli recently saw the picture of that so she wanted Aunt Sandi to wrap her up again the same way. She thought it was SO funny!

The girls at PT and OT

Brent's parents came over for Christmas

Lydia right after tube change and getting oxygen put on for the first time. She was not happy but delt with it. Normally we don't allow the kids to play iPad in the car (even on long trips, I know, we are mean!) but since it was just me in the car and she had just gotten the oxygen on I caved and let her play iPad in the car and it worked, she didn't touch the oxygen