Brown and Pink Polka Dots : Merry Go Round

Some weeks I feel like just a mom, other weeks I feel like a care coordinator... right now it is the second.

Jilli:
Jillian's walking has gotten rough and seams to be getting worse, not better. She is falling more and getting hurt more when she falls. She is complaining of frequent leg pain. Her walk at this point looks more like a child first starting to walk. When we saw the EDS clinic they said we needed to brace her legs. When we met with PT this week they agreed. I contacted Shriner's Hospital in Chicago as my grandfather is on the board there and they do ortho. We have an appointment on October 6th. I'm hoping she does not injure herself again before that because she really needs these braces. The debate now is if she needs a SMO or AFO.

Lydia:
Lydia's medical stuff is making my head spin right now. Friday I got a call from the GI nurse that the dr wants the upper GI study done before her surgery on the 9th so after multiple phone calls that is scheduled for this Friday. The nurse also said that Lydia is too small to get a GJ tube so for now we should just put a g tube in and feed her Alimentum into the G... I stopped her there. First of all we have switched Lydia to Elecare because she was still having issues on Alimentum, second this child can not have g feeds... that is not going to work. She is not handling her own spit in her stomach! Monday we were driving to Lydia's ped appointment and she started choking and vomiting in the car, bad! Like gasping for air and holding her breath and Brent yelling her name until she caught her breath. We pulled off the road it was so bad. She was covered in vomit of spit. It was one of those times where you are never so grateful to here your child cry because you know they are breathing. By the time we got to her appointment she was fine. This choking episode was scary and shook Brent and I up. Lydia chokes everyday and that is our normal but this was so much worse then normal.
She is up to 10lb and her ped said that the "normal" stuff looks good! She did have a labial effusion that we were able to take care of in the office.
Last night her GI doctor called so we could talk. I am so thankful for her calling because then things did not get lost in the telephone game. She told me that the hospital's policy is they don't do a PEG GJ tube until at least 5kg but they prefer 7kg (Lydia does not weigh that much yet). I really feel that we need to be able to drain her stomach to help with her secretions. We have decided to go ahead with the surgery on the 9th and place a g tube and use it just for draining and leave the NJ tube in to feed her. Once she reaches the magical number then we will switch her to a PEG GJ and as soon as she hits 10kg we will switch her to a GJ button. Not the perfect plan but a plan that I am hoping will help Lydia. Her GI doctor is also going to call pulmonology today to see if they want to see her with all the choking and if they are interested in doing a bronchoscopy (scope of the lungs). We talked about the formula change and she is glad that it is helping her gas pains but the obviously that is not going to do anything about aspirating. I did find out that the whole speech run around we went through was the covering GI doctor, not ours (that made me feel better). We talked about Lydia's choking episode on Monday. She said that if that happens again we need to go to the ER and admit her and we will rush the g tube surgery. She said if the choking overall gets worse to call her and she will admit. I am really hoping we can make it to Sept 9th for Lydia's surgery because Brent is having his tonsils out a week from today but if she needs to go in early we will cross that bridge and figure it all out somehow. Somehow all the pieces end up working out. Lydia woke up choking again this morning but it was not any worse then normal, so we will see how the day goes.
I'm also going round with med supply right now. The dietitian called on Friday and while Lydia's weight is up, she is still hanging out at the 15th percentile (she is still in newborn clothes and diapers). We are bumping her to 24cal formula. We have also decided that Elecare is the best choice for her. Elecare is very expensive. Before I was breast feeding and that costs nothing and then we were on normal formula and while that costs something it is not crazy... this stuff is crazy. Our insurance covers it for Jillian. Well the dietitian put in a script to med supply to get us formula from them so insurance would cover it. Well med supply is saying they can't figure out if insurance is going to cover it or not and the only way to find out is for them to send me 3 cans and wait to see if they will pay... 3 cans at $65 a can! And a can last 3.25 days. They said it will take 2-3 weeks to find out if insurance will pay. So we are getting the 3 cans from them and then will buy the rest elsewhere until we know if insurance will pay (Walmart sells it for $44 a can but it has to go through med supply for insurance to even consider paying for it). I am really hoping insurance pays!

We went to Door County this weekend, just the 4 of us. My parent's own a place up there so we just went up and hung out and spent time together as a family. On the wway to Door County we met friends at eh Children's museum in Green Bay. Yesterday my mom and I took the girls to Madison. My mom starts back to work this week and we wanted to do one last adventure. We went to the children's museum and the zoo. It was a fun day! Also Team Jilli is up to 42% of our goal raised!

Smiley Lydia

Jilli made a bubble wand

Jilli and Caroline playing market... they like to do this at children's museums together

I LOVE the Ergo!

Jilli after the children's museum

Lydia's swimsuit

Saturday morning it was pouring rain so we went to Hands On Art as a family and painted a project together

Lydia thought that stopping at the winery was really happy!

It is debated in the tube feeding community about swimming in natural bodies of water with a surgically placed tube. We take the safe option and don't let Jilli swim in natural water and since Lydia is getting a surgically placed tube we brought her to the lake to put her toe in before her surgery.

Matching girls

Sometimes when we got to restaurants they will bring crackers or water for Jilli just trying to be nice. We smile and say thank you because there is no point in making someone feel bad for trying to be nice and Brent or I will eat/drink it. Saturday night we went for dinner and they brought applesauce for Jilli. This one we could not eat because I am deathly allergic and Brent does not eat apples around me... we just laughed that this bowl of applesauce could kill 3 people at the table.