Often times the best thing to do when you are frustrated with something is to spend time helping others because then you focus less on you. I feel like God has used this past week to continue teaching me about His timing and about not having to be in control of everything but when to move when I need to.
Friday 8/5 we took the girls to the park in Lake Geneva. Brent was trailing after Jilli with her oxygen and I was sitting with Lydia. At our therapy place there was a poster about an inclusive playground they are trying to build in the area. I decided while I was sitting there that I would look up where they were trying to build this playground and figured out that it was the exact park that we were playing at... a park we go to frequently. And as I am sitting there reading about what they are trying to build at this park Jilli fell on the steps and sprains her other ankle. It is getting better day by day but she still has a limp. At therapy on Monday her therapist was really surprised by how bad her walking is looking right now. She thinks some of what we are seeing right now might have to do with her growing... we will see.
Last weekend was rather low key for us. Sunday afternoon we went and visited Dan in the hospital and then went to the zoo.
Monday after therapy we went to pick up Dan from the hospital and bring him home. On my way there I got a message that Jillian's friend Caroline was being admitted into the hospital to have an NG tube placed. I called Caroline's mom Stacy to see if they wanted some company and someone to talk to who has sat in the same place. Until you have helped hold your child down while they stick a tube down their nose it is a hard experience to explain to someone and it rips at your heart in a way that is hard to express so I wanted to be there for Stacy. After I dropped Dan off at his new apartment we headed to Children's to visit. The little girls played. It was funny because we got up to the room shortly after they were admitted so people were walking into the room and there sat 3 kids with medical needs just hanging out with tubes all over the place. After Brent got done at work he picked up dinner for the adults and brought it over. We know how hard it is to get out of the room and get a meal while your kiddo is in the hospital so we treasure when people bring us food when we are in the hospital with the girls and wanted to pass along the kindness. (also the in room food you can have brought to you as a parent has gone down hill massively... TV dinners would taste better)
Monday night our drive home got scary. I was on I43 and just passed over hwy 11 when I came over the bridge and a wrong way driver was stopped facing me on the interstate. I slammed on the breaks as there was a car in the lane next to me. Just then the wrong way driver hit the gas and came towards me. I was able to hit the gas and get into the other lane. It was a really scary quick situation. I called 911 and they had someone on the way already. Brent was a few miles ahead of me driving home and just missed getting hit as well. My poor parents though.. I was on the phone with them when I came over the bridge and I yell "that car is the wrong way" and then the last thing they heard before I hung up was that I needed to call 911. I called my mom back once we were safe and after I talked to 911... my parents were so relived to hear we were safe.
Tuesday morning I was messaging with Stacey and decided we would head up to Children's to bring Caroline some feeding tube supplies (when feeding tube supply companies set you up with the first delivery they don't bring you what you really need... so we brought them so things to help them get started with tube feeding at home) and before we left for the hospital Jilli and I made Caroline a Tubie Friend! I love being part of such an awesome organization. We then headed up to the hospital and the girls played together and I was able to share home tube feeding tips with Stacy. While the nurses are great at teaching the medical parts, there are so many practical home parts of tube feeding that families who do this at home learn. I am so grateful for blogs of other parents with feeding tubes who I have learned so much from. I am also so thankful that through this blog that Stacy and I have met. the girls became such good friends and I am SO thankful for my friendship with Stacy and that we are able to support each other on our kids' medical journeys.
Tuesday afternoon the state fair came to Children's and the girls were able to go down and participate. It was such a great event. The state fair with the heat and animals is not a good place for the girls so this was an amazing opportunity for them. They had such a god time! I am so thankful that Childrens does events like this and I am so thankful for everyone who donates to Children's to help make things like this possible.
Shortly after the fair Caroline was discharged. I am sure we were a sight walking out with 2 strollers, 3 kids, and a wagon and wheelchair full of stuff. We headed back over to the Ronald McDonald house where they were staying. The girls were able to go play in the playroom for a while. We had dinner at the house and then headed home. Thank you to everyone who donates to the Ronald McDonald house or give their time. At the end of a long day of appointments you could tell how much that meal meant to families staying there and for the families it is such a time of community of checking in with people who are going through similar things that you are and holding each other up.
Wednesday we had a calmer day at home. In the evening I went to a meeting about the inclusive playground in Lake Geneva and Brent had the two girls at home... they gave him a run for his money!
Thursday was oxygen and nurse visit. Lydia is at 9lb 4oz. Friday night Brent went to a movie with friends and I took the two girls to the design meeting for the playground. I love how Jilli will play with anyone. Lydia during the meeting insisted that she needing me standing and rocking her. The meeting ended up going late and after the meeting I needed to get gas and stop at Walgeen's for Jillian's meds. I LOVE our Walgreens! They care so much about us and keep up to date about the girls and always ask how they can help. I am so grateful for them.
Saturday morning I went to the library book sale. In the afternoon we had zoo class. This weekend we also got to spend time with Caroline's whole family. They are back in town for an appointment this week and since they came in early they stayed at a hotel so we meet up with them and the girls got to swim. They had a blast. Lydia also decided to start this morning by puking on her clothes... yummy!
If you read my last post about how frustrated I was about speech and GI... I have an update. Monday morning speech called me and said they had no openings before Lydia's surgery. After some talking they said they would see if there was any way that the speech person who saw us in the hospital could see Lydia out of the hospital. The lady said she would call me back. Brent and I talked and decided that this speech eval is most likely not going to change anything. This child still chokes on her saliva multiple times a day and is still vomiting at least once a week... without eating orally. The nurse that visits our house each week is just as confused about all of this as we are. I took a little time to think before calling GI. I didn't want to react on emotion. I wanted to make sure we were making the best choices for Lydia. I also wanted to search for God's will in the situation. When things start going not as I planned I try to remember to ask what God is wanting me to learn in the situation. I was trying to figure out if there was a reason that God was having us go through these steps... if even if it was no what I wanted if He had a better plan. I don't want to be my biggest barrier in my own life and the lives of my kids. I often forget to ask God's will in a situation but I try. I'm not positive why we are having to jump through these current hoops but one of the things I think God is using this to teach me is how to advocate for my kids to the best of my ability and how to do that effectively. By Wednesday afternoon I had not heard back from speech so I called GI. I asked them what the plan was for the upper GI. She said that the girls' GI was on vacation but she talked to a different doctor and they said it could wait until her next tube change out but I pointed out that she does not need a tube change out before surgery if she has surgery on Sep 9. I then told the nurse how Brent and I are feeling about the current situation. That she gained weight because of the calorie differences and how she is still puking and choking and that we are fine to see speech however she currently sees OT for feeding so we know what is going on there and we don't think a speech eval is going to change her need for this surgery so if they can't get her in before Sep 9 that we still want to do surgery when it is scheduled and worry about the speech later. She said that she will talk to our dr about it when she gets back in town. We will see what the dr has to say. About two hours later I got a call from speech that there now is an opening before surgery... hmmm. At least it is getting done before surgery. I don't think it will change anything but at least we will have jumped through their hoop! I just want to do what is best for my kids!
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