We're home!

Abigail is home!!

The doctors told us that Abigail was strong enough to go home today so we did not waste any time and packed up and headed home as soon as we could! Abigail's strength has returned, perhaps not 100%, but enough that she will do fine at home.

Thanks to the many who have been praying for Abigail and for us during this difficult time. And eternal thanks to our Heavenly Father, who is good and gracious to us who do not deserve it! We are so happy to have our little girl home again...

Abigail will be back to CHOP, however, on June 8th (her 7 month old birthday) for surgery to re-shape the bones in her head (to fix her craniosynostosis). We would covet your prayers as that will be another ordeal, but we know that the Lord is good in all things and that Abigail is a strong little girl!

-Jeremy + Mary

Today's Update

I went to visit "the girls" in the hospital this evening. Abigail is doing very well now at holding her head up, grabbing for toys and cooing like little babies should. She is strictly nursing now, no tube feeding. The only thing that the doctors are waiting to see is if Abigail can have her own bowel movement without "help." We are still hoping to come home as soon as tomorrow but really won't know until tomorrow, either. We are almost out of the Botulism woods! Praise God!

Now, some photos and videos below.


















Happy Abigail!


Abigail colors a picture.

-Jeremy

Some good news!

Thanks to all of you who have given us encouraging words over the past days; it is through your prayers that we can see our Heavenly Father pulling Abigail through the sickness and back into strength and life.

We have some good news today! The doctors agree that Abigail is gaining more strength each day; she can hold her head up better, she is trying to grab things when you put them in front of her, etc. Additionally, Mary can now nurse her consistently instead of being fed through a tube (the tube remains, however, to supplement as necessary). That is good news for both Abigail and Mary!

The best news of all is that Abigail may be able to come home within a few days; the doctors are going to continue to monitor her but if she continues to make progress then we hope to be home before the weekend. We are so longing to be home together, like a family again.

Thanks for continuing to check the blog - it means a lot to us to know you all care.

An Abigail Video

There is not too much to report today on the status of Abigail's recovery. She is recovering, but at a rather slow pace. A lot of the doctors will be in tomorrow and we expect to get some more information then. But for now, enjoy two videos:

Below is a video close-up of our little girl.

Here's more footage of Abigail and the room that she has been living in for the last week.

The rat died! The rat died!!

I have never been so happy at the death of an animal!

We received news this morning that the rat that was infected with Abigail's "botulism" has died. We are very happy at the death of this rat because it means that Abigail really does have botulism, which is a reversible disease. Our fears of muscle disorders or other diseases has lessened significantly, but still pray that we aren't thrown a curve ball.

Abigail's progress is certainly slow, but she also never got as sick as they are used to seeing when infants are infected with botulism. So she has a very unusual case of botulism, but the rat tells us that it is botulism (I haven't found out how accurate the rat test is, but I am going to ask today).

Continue to pray for healing for Abigail and strength for us.

Anyone know what a nif is?

We didn't either, until recently. It is a term that is used when a sort of ventilator is put over Abigail's mouth and nose to measure how deep her breathing is. Apparently, her nif (negative inspiratory force) is slightly better today. That is the only bit of good news that we've received all day. No bad news, fortunately. We are still waiting for the Lord's purpose to be shown.

I am going to try to post a video of Abigail tomorrow (Saturday) if I get some time, so tune back in.

Waiting on a rat

The Neurologist just stopped in with the results of the EMG. The test ruled out some very bad things, which is good. It did not rule out some sorts of muscle disorders, but they are not going to proceed with more muscles tests unless they determine that Abigail does not have Infant Botulism. Their results were in line with someone who has Infant Botulism.

They are 90% certain that she does have Infant Botulism (remember that IB is good because it is reversable) but the only way that they can really know is to get the results from the lab. Basically, the lab infects a rat with things from Abigail's stool and they wait to see if the rat dies or not. Very simple process, but it could take up to two weeks for the results.

We'll probably be here at the hospital all next week for sure.

EMG

Poor little Abigail :( The EMG test was not at all fun for Abigail as they poked and zapped her. The result are not in yet.

One glimmer of hope was that there seems to be a very, very slight increase in her strength, as noted by more then one person.

Other then that, it is matter of continuing to watch and wait.

Today's Update

Still not much improvement on Abigail's part, unfortunately. Tomorrow she will go in for an EMG, which is basically a test of the muscles that determine how strong or weak they are. They'll also test her nerves. Basically, the idea is to rule out whether it is a muscle disorder or not.

It'll be hard to watch because the test involves sticking a needle into her muscles and causing them to twitch. She will probably be sore after the test as well. Please pray for peace for us during the test.

-Jeremy + Mary

Still Waiting...

Not much new on Abigail's progress. The doctors seem to think that there has not been much change since yesterday. Keep praying for healing! Thanks!