Working at a daycare also means that we are in the swing of getting summer stuff ready. During the summer I switch classrooms and get to spend my day with school age children. I have a torn heart as a teacher between loving the fours and missing working with second graders. This kinda provides me with my mix :)
This summer also marks a switch for me professionally. I am going from working 4, 10 hour days down to part time. While I love my kiddos at work, my home kiddo needs me too and her level of needs has not been slowing down. I am excited for this change because it means more time with my girl and maybe being able to catch up on a few things that have not gotten done because my day off during the week is always revolving around Jillian appointments.
Right now I think part of my exhaustion has been the mounds of medical paperwork I have needed to fill out. Resigned some things for birth to 3, a tun of stuff for genetics and the biggest packet of all for feeding clinic. The hardest of all was the feeding clinic stuff. A 300 question development assessment, 3 day food log (easy to fill out when your kid eats nothing), physiological questionnaire for Jilli and myself and then a LLLOOOOOONNGGG packet asking every medical question you could think of. They wanted dates and doctors names for everything so I spent 4 hours digging through her medical records. I have to say I LOVE the Children's Mychart! It was so helpful in filling all of that paperwork out. Sadly the Aurora Mychart only has records available for a year so a lot of what I needed I could not see :( I was really dragging my feet filling it all out because:
1. I spent a ton of time filling it out and I don't think she will even qualify for feeding clinic. She is not safe to eat food and I have heard that they want kids off J feeds before they do much in feeding clinic. I feel like this is one of their hoops I have to jump through for them to see once again that she can not eat orally safely. I kinda feel like I am running into a wall. I know they want her to eat orally, we do to, but it needs to be safely. They don't have to do nebs around the clock for days, sometimes weeks after she gets something in her mouth. They don't see how it effects every area of her life when she gets sick from it. I know we have smart doctors who are trying their best for her, just some things seam crazy. So I filled out all of the paperwork and in the section at the end I included a nice little paragraph diplomatically explaining how I feel about the thought of her eating orally while she still aspirates on water, makes me feel.
2. In order to fill out the LONG packet I had to dig through all of Jillian's records. I could see some ways that she has grown so much! She is cruising along furniture and taking a few steps here and there. That is a long way from a year ago when she was not rolling over yet (she did not learn how to roll until 7mo old). I see how smart she is and how amazing her fine motor skills are. But at the same time the health stuff hits you in the face when you dig through it all. I see how her lungs and stomach are no better then the were a year ago, and honestly they are worse. She is using her nebulizer consistently for at least a week out of every month. She aspirated on pool water just being a normal kid. She tires so easily. I should be say "where do you get all of this energy... mommy cant keep up" but instead she plays in really short bursts and then we find her curled up looking at a book for 30 minutes with a blanket. While it is great that she loves to read, and her fine motor skills are amazing since she spends so much time sitting, it is hard to see her get so worn out from everyday kid things. She needs a lot of breaks in her day and lucky for us she is good enough about self regulating at this point that she takes breaks when she needs them. I don't think she honestly really has a choice, she just cant keep going at normal kid pace for very long. I look at other kiddos Jilli's age out in public and to me they act so old compared to her. This does come to our advantage at times because people think Jilli is younger then she is so they are not as surprised when she does not eat food or walk, they just marvel at how great she is coloring or at how many teeth she has.
I think for the first time since February we finally have a hold on her thrush and she currently does not have a yeast infection in her diaper area!!!! Maybe we are finally trumping the yeast. We put her on a different yeast med last Tuesday and it seams to be working. She could not be on Erytho and the thrush med because they make the Erytho side effects worse however we are seeing it make the Cypro side effects worse too. The poor girl goes to bed at 8pm but is tossing and turning until 11pm or later. You can tell she wants to sleep so bad but cant. She is not really napping well either. The thrush med is a 14 day run and we are now 1/2 way into it so hopefully there is an end in sight!
Jillian's walking has not really progressed. She will take a few steps if you get her in just to correct position. She kinda lunges at furniture. She will walk for short bursts of time however it wears her out.
She has moved sounds again. Jillian seams to only say one sound at a time and then seams to "loose" that sound before she gains another. She was using the "m" sound a lot a couple of weeks ago and it sounded like she was saying momma. Now the /m/ sound has mainly gone away and has been replaced with /i/. She had speech today and showed off some of her signs. She signs "more" "please" "hi/bye" "thank you" and "all done."
This weekend we put together her ride on toy that she got for Christmas. She is loving sitting on it, riding it a little and pushing it around. She has been "parking" it in her tent.
Jillian and I have been loving the nicer weather and getting out to run in the park. I want to get to the point where I can do one of the RunDisney races. I had thought about running in the Children's Hospital run/walk however I decided to walk it again this year because then I can talk with others while we go through. It is such a fun event!
Another thing we were busy with in the month of May was making Tubie Friends! I am loving being a Tubie Friend surgeon and being able to give back to the tube feeding community. This is such a great group of people who have such a genuine heart of making the lives of kiddos a little bit easier.
Last weekend we were able to celebrate my little brother graduate from collage. He worked so hard to get to this point. In the fall he is leaving for Kent State for his PhD program in Physics. Over the summer he will be living close to us at an observatory working on a project with NASA.
Jillian has popped 4 molars and is currently working on her fangs... lol! They are so close to coming threw. She is such a drool mess right now. A few times it has been hard to tell if she puked or drooled everywhere.
We are so grateful for our friends who have stuck by us through the last year and a half. I know this would be an easy time to walk away. We don't get out much, spend lots of time in the hospital, and honestly our life rather revolves around a 17 month old; making plans have to be flexible and hang out time is always tentative. I am so thankful for the people who have made it a point to be in our lives even when I feel like many days I am a crapy friend (I'm working on being a better friend to all of you, I really am!). We truly appreciate our friends who make it a point to call, text, facebook, or come over. It means a TON to us. It makes it feel like some of the craziness of all of this is a little less crazy! Thank you to the people who truly listen and hear not only our words but our hearts. To our friends who hold no judgement, but love us. It refreshes us and points us back to Him. I just don't know how to say thank you enough to some of the most amazing people that fill our lives.
So thats kinda an overview of our lives right now. The day in and day out. We are blessed to get to be Jillian's parents and share her life with her. She is such an amazing little girl and her smile melts our hearts. Her hugs tell you it is all going to be alright. We are blessed that God chose us to be her parents!
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| GJ backpack... drainage bag with stomach bile... pushing a baby.... our normal :) |
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| Cozy with her baby doll |
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| Reading a book. |
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| When she wants to cuddle, this is how she comes to you :) How can you not just melt? |
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| Putting money in her piggy bank... what she wants to do ALL the time |
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| Playing in a box with Uncle Dan |
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| WEEEE! |
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| Baby needed the inhaler |
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| Sitting with her great grandpa at uncle Seth's graduation |
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| Signing "more" |
