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Thank you for continuing to pray. Our biggest challenge with Aubrey right now is that she is losing weight because she refuses to eat. She is like an impossible, obstinate infant. She kicks and screams any time we try to feed her. Therefore, her doctors are considering a surgery to put a feeding tube in her stomach so she can get food in her body. This will depend on whether the doctors discover she has acid reflux. We don't want this to happen, because it would delay her starting physical therapy.Here's a possible good sign though: her neurologist has noted her agitation and emotions, and he thinks it's a by-product of the anti-seizure medication she is taking. Obstinance and agitation apparently are common side effects for kids taking the drug (Keppra), and this doctor has even seen a child go from walking to temporarily crippled as a result of taking Keppra. So they are decreasing the drug tonight, which may make her less stubborn and more likely to eat. Then maybe she won't have to have surgery to put in a feeding tube.
More good news: Aubrey is getting strong enough to roll over and move her body more naturally now. She will eventually have to go to a physical therapy hospital nonetheless.
We're encouraged by how well she's responding to Lilly, her sister, playing with her and helping her get healthier at the same time. Lilly is able to get Aubrey to do things that nurses and doctors can't (because Aubrey can't bear to be around them; it freaks her out). Therefore, Lilly will probably have to go to therapy with Aubrey for half of the day, once it starts. It's a strange blessing that Lilly is part of the prescription for healing, and we pray that God will give her what she needs to help her sister.
Please also be in prayer for our family members who are up here helping us bear the load. Ashleigh's family members have made long drives up here to come and help in so many ways, and my sister and parents are doing hospital duty and babysitting duty while trying to keep from melting under the weight of their frustrations and sadness as well. We oftentimes forget these kinds of caretakers, and I would ask you to pray for them as well.
Finally, for Aubrey, please pray that (1) they will be able to give Aubrey a feeding tube that does not require surgery; (2) her agitation will decrease with the decrease of Keppra; (3) she will have no acid reflux; and (4) she will have no more seizures.
Thank you again for praying for Aubrey, our families, and us. We are so grateful.
Still praying in Ontario, Canada. And now adding a few thoughts about tubes.
ReplyDeleteI know the thought of a g-tube is yucky. And for sure if there's a way around it (ng-tube for a bit, I would think), that is certainly preferable. I know the feeling of not wanting your precious little one to go through any trauma, and surgery certainly falls under that.
I just wanted to mention a little of my experience with my son and tubes. My boy was born with birth defects that made it impossible for him to eat or breathe for the first 4 months of his life. Once he was over the breathing issue, the feeding remained, and so we fed him by ng-tube for 10 months. Reflux didn't really start kicking in until about month 7 or 8. Meds (domparidone--might have the spelling wrong, it's been 8 years, and Xantac) were helpful here, but finally at 10 months we had a g-tube put in...and what a glorious thing it was. Gone was that constant stress of worrying about his caloric intake. Meds were a breeze...
Anyways, you're a doctor, so you probably know much of this...but when I get talking about g-tubes with other parents, I always say that I wished I had done it muuuuuch earlier. And I also realize that Aubrey's situation is much different then what my son went through--my son started out with many problems and we didn't have much hope that it would change--Aubrey will (as we are all praying) get better and be able to feed herself once more.
Bottom line: don't be scared of the mickey button...it was a wonderful blessing for us. Healing was very quick and we had hardly any issues with it at all. Best thing we did for our son.
Get better beautiful girl!
Please let me know if I can help in any way. I am an adult with epilepsy (started 4.5 yrs ago). I was placed on Keppra. I had brain surgery to no avail. I am now completely off of Keppra and all AEDs. Thank you, Lord! You/the doctor are correct about the Keppra and how it affects behavior. Please reach out to me if you have any questions at all. Becca Good has my contact info.
ReplyDeletebecause of HIM,
Meredith
My name is Sally and I am a college friend of Beth. I have been following the updates and have been keeping you in my prayers. I also have a two year old and can only imagine the fear you have. I am glad to hear she is responding to her sister. Keep your faith.
ReplyDeleteI had an older sister who took me on as her own when I was a tot. She had more influence than anyone. Today we're great friends! Hopefully, this will develop amazing bonds and unique character qualities with your kids. What a sweet unexpected blessing!
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