So sorry I have been so delayed in posting this.?? I have been out of town.??

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Before we left for vacation, Susie brought Landen over??so that we could spend some time with him.?? He slept for most of our visit and we couldn’t get him to wake up for pictures with him and Ty.?? While this cherub little sleepy face you see is the most common one these days, he does have brief moments of??alertness.?? In fact, Landen was actually giggling one night and Susie recorded it on my answering machine for me – what a gift.?? Due to seizure issues, Landen has been in the hospital??a week now and will not likely be released until they can do neuro surgery.

The issue is, in order to??perform surgery, Landen’s blood work must be at an acceptable level, he must be infection free, AND he must be seizure free for 12 hours.????This scenario is seeming more impossible all the time.?? Each time Landen has a severe seizure, it changes his??levels and messes up his blood work.?? They??were going to test him??a week ago Saturday with the intent of performing the surgery at Barrows in Phoenix on Wednesday of last week but the Friday night before he had too many grand mal seizures??and they had to cancel the surgery realizing his levels would be too far off.

This week the ENT Dr. and the Neurologist agreed upon another game plan.?? Remove his adenoids and tonsils.?? Apparently, preemies have a tendency towards large tonsils (I just got a referral to an ENT for Ty because of this as well interestingly enough).?? The concern is that the large tonsils may block the airway causing levels of sleep apnea.?? The apnea may then contribute to more seizure activity.?? Because the medications are not managing to keep the seizures at bay, Landen’s Dr.s are looking for every other possible means of seizure control.???? This surgery was done on Friday and all went well.?? Unfortunately, though it was a nightmare day for Susie.?? Landen had some very bad seizures post surgery (though none during surgery thank the Lord) and then had an allergic reaction to the demerol they gave him post surgery.?? Children with neuro sensitivities (and sometimes healthy children too), have a lot of trouble coming out of anethesia.?? Both Ty and Landen come out of anethesia in a rage and out of control.?? Landen and Susie both have had a miserable weekend.?? Jury is still out on whether or not this surgery will help control some of the seizures or not.?? Also, Landen has developed a fever post surgery and it hasn’t been determined yet whether or not this is surgery related or infection.

Dr.s are also discussing putting in an electrical pacer.?? Basically a pacer would send shock waves to the brain at the onset of a seizure reminding the brain to get back on track.

Landen is on 6 medications right now being administered TWELVE times a day!????Most of the time he is still pretty deeply sedated but he does have moments of alertness.?? While we were out of state, I was encouraged to hear that my dad (Papa) got to talk to Landen on the phone.???? I heard his little voice yesterday and though I was so sad for his frustration, was grateful to hear him making sounds at all.?? (He wanted his IV OFF).

Surgey will not occur for at least one week due to Friday’s tonsilectomy.?? In the meantime, it appears that Landen will stay on the peds floor at Barrows (St. Joe’s).?? The other kids are having a tough time with mama gone, and Jacob’s birthday didn’t get the attention it needed either.?? The kids are worried about Landen, mom being gone, Jacob, and Christmas too.?? As Susie said to me on the phone “I hope the kids will “get” Christmas this year because it looks like this will be a Bethleham Christmas”.

Thank you for your diligent prayers on his behalf.?? I appreciate it, and I know the Jolley’s appreciate your outpouring of love and concern.?? I will try to post updates more regularly now that I am home.?? Funds for the surgery are still needed so if anyone would like to send a special monetary Christmas gift to the Jolley family, please email me privately.

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Note to Shayla – Sorry for keeping you in the dark so long!?? I know that this??situation is near and dear to your heart as well as our little Kourtney was the third NICU bunk mate.?? Praying for the day that us three mama’s will see all THREE of our kids together and healthy.??

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