Prayers for Jemma

Oh what a difference a year makes!

by Stefany on December 31, 2013

New Year’s Eve of 2012 is when everything kinda happened. Jemma wasn’t feeling well and she slept in the chair with me all night. It was the next day that I decided to take her to the hospital and the whole nightmare started and continued for 32 days.

nye 2012

I have been a ball of nerves this past week. I have told you all before how I honestly think I have PTSD from Jemma’s hospitalization. It doesn’t take much for me to get a flashback and the nightmares come often. I still worry when her nose starts to run and coughing sends me to the closet for my stethoscope. I can’t help it.

But, she has come so very far. We weren’t sure how long it would take her to walk and the doctors were concerned it would be months. It was within a week that she was up on her feet and moving again.

jemma home from hospital

Jemma is a fighter and she keeps proving that to me. She has some breathing issues but they haven’t been bad enough to warrant medication in months. She remembers some of what happened (you can tell when she goes to the doctor) but she isn’t suffering the stress of the hospital stay.

jemma growing

I love this baby more than anything in this world. Being able to take care of her every day of her life is a blessing. I remember being worried that she wouldn’t make it out of the hospital and, while I still worry, I am so thankful that we have her in our lives. She is a miracle and I am blessed.

jemma and mommy

This year, we won’t be spending it in a chair and I don’t foresee any trips to the hospital. We are going out as a family and we are going to have fun. I’ll be saying a prayer of thanks that my sweet Jemma is able to do that with us.

One more thing… going through pictures it amazes me how much her hair has grown! She started the year with baby hair and it was cut in the hospital due to IVs. It is now half way down her back and is gorgeous, white blond with tons of curls!

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8 months out and feeling fine

October 2, 2013

It really is hard to believe it has been 8 months since we walked out the doors of Children’s Hospital. It has been 8 months since the nightmare ended and life for my baby began anew. Things haven’t always been easy over the past 8 months. Jemma had severe withdrawals from her medication and was on a round-the-clock dosing at home for over 2 weeks after we left the hospital. At times she fought it and I was scared she was going to have to go back to the hospital. But, she and I worked it out and she finished her medicine as prescribed. She lives her life as she wants but we are always extra cautious with her. We nearly lost her. I watched […]

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Jemma suffers and she doesn’t even know. I know. I cry. I pray.

July 31, 2013
Jemma ToBeThode

This post comes after another very long night of no sleep.  Bear with me for a few… You wouldn’t know from looking at that sweet baby above what troubles she has. You wouldn’t know that she has lungs similar to that of an aged person. You wouldn’t know the fear and anxiety that troubles her on a daily basis. You wouldn’t know that she struggles to breathe some days. How could you? She looks beautiful; like any other child living their life. But I know. I know and it breaks my heart daily. Jemma is not any other child. Jemma is special… wonderfully beautiful, blessed, special. Jemma is suffering from night terrors on an almost daily (nightly) basis. I have tried all I can but […]

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Wrestling an alligator (aka giving Jemma a breathing treatment)

July 16, 2013
Jemma ToBeThode

It has been quite some time since I gave you all an update on Jemma.  Today, I wanted to update you on how my sweet baby girl is doing. We went to see the Pulmonologist last week for Jemma’s quarterly visit.  They were overall very happy with how she is progressing. Her language is right on and her fine and gross motor skills are perfect for her age. Basically, she has done a great job in catching up on the time she lost in the hospital. Where Jemma is lacking is beyond her own control though. Jemma has been having some difficulty with breathing when she gets excited. Whether it be playing or crying, if she gets worked up she often times has difficulty breathing. […]

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Jemma Doctor Update

March 9, 2013

    I know I owe you all an update from Jemma’s doctor appointment this week.  Now that I have had time to process it all, I will give you the rundown of what we now know… Jemma’s xray was “slightly better” than when we left the hospital.  They still see some stuff in the upper right lobe.  The doctor said that it is most likely lung damage but they aren’t sure the effect, if any, it will have on Jemma in the future.  She is too young to do the tests they would need to do so we are basically going to wait and see how she does over time. They are pleased with her overall progress.  She hasn’t been to Physical Therapy yet […]

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