Little Miss is eight months. The 27th is a little hard around this house. With each month that passes I get more discouraged. This month has been especially rough. Lila was put on a high dose of steroids and she has been having some adverse side affects. Poor thing is extremely puffy. Notice the large face in the photo. (Although maybe it was because they had her feeding pump set to high. She was gaining 65 grams a day. Normal weight gain for kids is between 9 or 10. She was so full.) She also has been whimpering in her sleep. Heartbreaking! She has been so lethargic. I am so excited for Thursday when we have her final EEG. No matter the outcome she will be taken off the steroids. I hope that is what is causing her to zone out.Our neurologist wants to do a muscle biopsy as the next step. I am a little hesitant. I don't want to cut my baby. Especially if they are just going to come back and say all is normal, like everything else we do. I feel so bad for my little love bug. She handles it all with a patience that would put anyone to shame let alone an eighth month old.
Besides having our EEG on Thursday we are meeting with a group at Primarys called the Rainbow Kids. It's mission statement is to help families and kids who have life threatening illness. I'm a little sad that they have asked to take on our case. What does that mean?
Despite all of this Lila Patricia is as sweet as ever. Just a little cuddle monkey. I feel like she comforts me more than I comfort her.
Lila has been so lethargic that her therapists have told me just to hold her and love her and not make her work. (I bet you can guess how well that went over with me) But despite that we got a lot of fabric from grandma Kimball and our new favorite past time is listening to classical music while looking at the colors. Some days are better looking days than others.
Lila is getting so much more hair. It's really filling in and sometimes it looks like it has a bit of a reddish tone to it. If you go in the sunlight it is white, but around the house it looks very strawberry. Who would have thought I would have a little strawberry blond, blue eyed girl! She is gorgeous.
Love the baby legs.
6 comments:
She is darling, as usual. I hope the EEG goes well on Thursday.
Lila is so beautiful! I love the 8 month pics!
She is so beautiful Kristi! I pray for her everyday. It is crazy, I have never even met her but she just melts my heart. I will be thinking of your family on Thursday.
The baby legs are darling.
I want to let you know....that a muscle biopsy is a lot less painful then it sounds. Typically the child is good to go the same day. BUT I would be extremely hesitant to let PCMC do it because it must be taken care of properly and needs to be sent to different hospitals in other states to get a proper dx. If PCMC says they can dx metabolic disorders/mitochondrial disease or FODS from a muscle biopsy (as in ...they themselves can do the pathology)...please don't let them. They do not have the pathologists that are trained to really truly do it. Most states do not...PCMC is not alone. Mito and metabolic disorders are best dx by: Hermann's memorial in Houston Texas, Cleveland Clinic, ect.
Sarah
I don't understand why people think that they know all there is to know about PCMC. PCMC has VERY competent physicians, nurses & personnel. And ACTUALLY they have achieved NATTIONAL RECOGNITION for being an outstanding CHILDRENS hospital many times over. PCMC does send out labs all the time. AS DO many other facilities. Please don't listen to lay people. Listen to people who have actually WORKED in the industry for MANY MANY years!
She is beautiful. I echo both comments from above but I do think its useful to look at all options when doing a MB. Atlanta and houston are The only places that do fresh biopsies, which has been critical in diagnosing certain diseases for people, particularly very young kids. But pcmc is an amazing hospital that really does an incredible job caring for kids....we feel blessed to have them. But I am just some random person leaving a message on your blog so take it fwiw. She is very very beautiful and you are doing a fabulous job! (I actually do know friends of yours, not a complete woerdo stalker)
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