Brown and Pink Polka Dots : Happy Birthday Lydia and life updates

Happy 1st birthday Lydia!

Its hard to believe you are 1 already but yet at the same times it feels like you have been a part of our family forever.

It's been an interesting year. From you joining the feeding tube club to GI bleeds and all sorts of interesting things... you know how to keep us on our toes! You are full of spunk and determination.

You are still my cuddle girl. Your favorite place is to nap on me, that has not changed this year. Although after 10pm its daddy you want to get you to sleep, although sleeping though the night every night is still not your thing.

You love to wave bye-bye and clap your hands. You are learning to blow kisses. You pull up to stand next to the furniture and you love to try to get Jilli's pulse ox. You hate being alone and would rather see people you know then play by yourself. You like to say the world "yea" especially after we tell you no. You also love to shake your head yes and think you are so funny doing it! You like to pull to stand and then let go and you love playing with empty water bottles.

We love you baby girl!

This past week we have been back in the full swing of 3 days a week therapy. Jilli is getting closer to her baseline each day. That trip to Disney really helped her. I worked the past couple of days and figured out our therapy days, RMH/CHW days, and other things that need to be done this summer. Its going to be a busy one!

We got the call that Jilli's surgery is August 8th. They pushed it back because if it is later in the summer then GI has agreed to do her EGD at the same time meaning she doesn't need to go into surgery twice in a short time which makes me happy. I am hoping her ears hold out and drain ok between now and then but at least we have a date to make it better. We are still waiting to hear from GI scheduling because we are hoping to do Lydia's yearly EGD the same week. Hopefully that all works out! We are also still waiting to hear from pulmonology to hear if they are wanting to join in for either girls however Special Needs has contacted them multiple times and they are not getting back to anyone which is really annoying me!

Jillian's request for a wheelchair has gone to the state and the state has sent back questions asking why she needs it and such. Jillian's PT and OT are writing a letter to the state to answer all of their questions. I am still waiting on a couple of letters from doctors to send to our primary insurance company. This whole process is so frustrating! Last I heard our primary is still not returning the phone calls of our rehab doctor for the peer to peer review despite her calling multiple times. I am hoping the state comes through, if not I guess we will look into other funding options. I know below you will see pics of Jilli in a wheelchair... this is a chair that is currently on loan from a lending closet however it is not properly fitted to her and does not included the power part so we are only able to bring it places where I am able to push her for long distances (ie it doesn't work for going to the store where i need to push a cart) because she does not have the arm strength to push herself through a store. She can propell herself for short distances but for many everyday things it is not the right chair for her, this is why she needs the chair we are trying to order.

We are headed to RMH soon for appointments so Brent looked at the RMH meal calendar the other day an noticed that there is no one signed up to sever any meals from July 1-3rd and since we had not decided what we were doing that weekend yet we thought this is the perfect answer so we are going to serve dinner on the 1st. If you are interested in joining let me know! Being there for holiday weekends is not what anyone dreams of but if we can help make it easier for others then lets do it!

The state sent this week that they had forgotten to give us some of the paperwork to fill out for Jilli's Katie Beckett review so I did that quick and got it in the mail. Hopefully they process all of that quickly!

I have also started working on stuff for Team Jilli & Lydia... click here for more info

We have also been helping with things for the accessible playground in Lake Geneva! We got to tell a film crew last weekend why this is important to our family. If you want more info on the project or to donate please check out the never say never playland facebook page or website. Jilli asks me all of the time when she will have a playground near her house that will be safe for her and to make that happen we need funds and hands! Jilli personally would like a few more ramps sponsored off the sponsorship list, they are $500 and there are still several left to be sponsored, there are also fence posts for $50... both help to get the playground built!

I want to give a HUGE THANK YOU to everyone who helped with the meal train Kaet set up for us and brought us food or sent us gifts cards! Thank you so much. I am normally someone who likes to write out thank you notes but life has been rather crazy so I hope you all will accept my apology for not writing them, but we truly are so grateful and so touched by your kindness!

This week is a typical therapy week and then we have special guests coming next weekend!

Lydia and baby dolls

My children are in love with pineapple clothing, they don't like any other clothing with food on it but pineapple stuff is exciting to Jilli right now, she even gave up getting a pair of pajamas she wanted so she could buy this outfit for her sister

Jilli playing with her doll. I love how she put her medical stuff in a bucket to make it easier to cary!

The girls get so excited when he comes home from work

this is how Jilli talks to film crews!

Lydia in her birthday gift!

Nate and Jilli on the mary go round... this is what Jilli wants most at the park by our house!

Nate and Lydia. Those two really love each other. We kept asking her that morning who she wanted to come to her birthday party and for everyone but Nate she would just look at us but for Nate she would shake her head yes and say "yeah!"

Jilli pulling Lydia

playing in PT

We watch a vloger called Justin Scarred... he does a lot of Disney and Disney history but right now he is driving down Route 66 and Jilli is loving watching it. For Jilli, driving down Route 66 isn't a good option right now, but watching Justin's videos brings it to her. She has a backpack on her shoulder and she is pretending to travel down Route 66 too!

I lost this binder this week... like tore the house apart lost it... yes is might be a super clearance plain white binder but inside in my address book and lots of important notes and such... thankfully it was found but it was a long day searching for it!

She loves her daddy!

Jilli fell in PT this week. She always climbs up on a chair to get hand sanitizer when she gets there. Getting on and off chairs safely has been one of her goals. She has been doing this for a long time but this time they had switched chairs and this one didn't have the same handle on it. She reached over and fell off the chair and landed with her head in the garbage can and her leg braces stuck in the handle of the chair. She is fine but got a nice fat lip and cut the lip open in three places. It sure did bleed but she is fine!

Lydia refused to play with this at home so we brought it to PT and she thinks it is cool there. Silly girl. Thank you Matt for buying her a toy she will push at home, we are really thankful and she loves her car!

Jilli wanted to buy Lydia a birthday gift so I brought her to the store. She picked out a baby laptop because Jilli loves her toy laptop and she thought they could play with them together and that Lydia would like it since she likes hers.