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From the back

Can you tell we are ready for summer. Poor Ry won't be able to swim though :(



Ry playing peek a boo.


Cousin Christian and J.

Such a big girl now.




Grandpa Bitler and J


Aunt Kayla and J


Jordan giving Maddie kisses and Maddie kissing back.








Rylee had her bronch on Friday and unfortunately she is going to have to have the double stage LTP instead of the single stage LTP. The doctor doesn't feel comfortable with only doing part of her airway so she is going to do the posterior and anterior reconstruction. What this means is that she will have some of her rib graft stitched into her airway and then a stent will be placed for 4 to 6 weeks. We will then go back for another bronch and they will remove the stent and make sure she doesn't have any scar tissue or other issues that would cause her some trouble. She will then go home with her trach for another couple months and we will begin capping her trach. This is where we will cover her trach completely with a cap and she will do all her breathing through her nose and mouth instead of her trach. This surgery is actually safer and does have some benefits to it as well. She will not have to be sedated for several days and she will not have to suffer through the withdrawal of her sedation. The doctor told us to expect a stay from a few days to a few weeks. It all depends on how Rylee recovers. Rylee had a horrible time in the recovery room and had everyone on their toes. She was very agitated and they had to call me up to her room as she quit breathing. They informed me that she turns blue very quickly! Several of the nurses and staff came by after I got into the recovery room and told me that Rylee is the strongest little girl they have ever had come through their recovery room. I guess she just about flipped off the bed and tried to pull her IV out. Nobody could get her to calm down so that is when I got to go be with her. I think she knows how to get them to let her mommy come see her! Once I got into the room with her she was much better but was still having trouble with her O2 stats. The doctor is going to make sure she is given something extra for pain and discomfort on Wednesday so we don't have any episodes like that. It was a very stressful day and we are glad that it is over and we will be at CMH on Wednesday for Rylee's reconstructive surgery. The doctor did inform us that if there are no rooms in the PICU they will have to cancel her surgery. Jordan enjoyed the day with her grandma and was very glad to see us when we got home. I took Jordan to Hoyt, Ks for my 81 year old Grandma's wedding on Saturday and we had a great time. Jordan was a lot more social than she normally is and even let several people hold her. These next few weeks are not going to be easy for Rylee and Jordan so please keep these angels in your prayers. We are going to try to get one of us home every night so that way Jordan gets to spend some time with one of us during Rylee's hospital stay. I am not comfortable with leaving Rylee in the hospital alone so I want one of us with her at all times. I am hoping they have one of the Ronald McDonald rooms in the hospital available so we can get some rest. I will post updates as often as I can. Our little Rylee is a trooper and will handle this like a champ.

Rylee walking!!