Saturday, January 31, 2009

The past few days....

So, the Riggall family has been learning how to revert back to a state of normalcy over the past few days. Things so far are going rather well, except for Mary, who can't seem to get caught up on sleep. Folks from our church are chipping in with a few meals during this process, for which we are grateful - one less thing to think about :)

Abigail also has some adjusting to do: she went from a quiet, peaceful environment where she was the center of attention, to a chaotic house with a toddler running around and screaming and taking up mommy and daddy's attention. I'm not sure she liked it a first but she is getting used to it.

A big thanks to Mary's mom who played the role of nanny last week while Mary was living at the hospital and Jeremy was splitting his time between work, the girls and home life. She really saved us from an extremely stressful week and did a great job taking care of Jaron.

The next few days will carry a normal schedule, plus us trying to catch up on a few little projects that we had started before the trip to the hospital two weeks ago. Oh, and I think there is a football game to watch somewhere in there as well...

Wednesday, January 28, 2009

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

Tuesday, January 27, 2009

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.

video

video

-Jeremy

Monday, January 26, 2009

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.

Sunday, January 25, 2009

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.


video

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

video

Saturday, January 24, 2009

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.

Friday, January 23, 2009

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.

Thursday, January 22, 2009

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.

Wednesday, January 21, 2009

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

Tuesday, January 20, 2009

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!

Monday, January 19, 2009

Poor Abigail

Hey gang! As noted in a previous blog, it has been one thing right after the other since Abigail's birth and time for blogging is short. There are a lot of things to mention, but the thing of import at the moment is baby Abigail.

This poor girl has had a tough life so far (and she is only 10 weeks old!)- many of you know that she is currently in the hospital being treated for Infant Botulism. Botulism is a rare disease in which a particular bacteria attacks the intestines and muscles of a baby; it comes from spores found in dirt in specific places in California and Bucks County, Pennsylvania (click here to find out more). A very expensive antibiotic was flown out from Berkley California (the only place in the country where you can get it) and it is now in Abigail. We are waiting for the antibiotic to do its thing, which we hope to see signs of improvement over the next 24 hours. There is always the chance that it is not Botulism, in which case there will need to be a series of tests done to determine why she seems to be getting weaker. Please pray that it is Botulism as the symptoms of Botulism are completely reversible (it seems weird to ask prayer for our daughter to have a rare disease!).



In addition to the above situation, Abigail has been diagnosed with Metopic Craniosynostosis (click here to find out more). Basically, two of Abigail's bones in her head have "fused together prematurely" so that they cannot grow outward as the brain grows, causing her head to come to a point at the forehead. Abigail will need to have surgery in which they remove those bones and re-shape them to a normal shape; the surgery is scheduled for June 8th.

As you see, Abigail has been through a lot and has a lot more hard times ahead; we also have been through a lot of scares, disappointments and stress. However, through it all, we have felt the nearness of our Lord as He guides us and grants us peace during this difficult time. Also people are coming out of the woodwork to help us out with Jaron, providing food, going shopping, etc., which has been greatly encouraging.

Jaron also has spent his share of time in the hospital; last weekend he jumped off of a step and landed wrong and was not able to walk on his right foot. So, off we went to the emergency room for x-rays, but thankfully there were no fractures. They wrapped him up in a splint and after two days he was up and walking like nothing had happened.
See an update of our Holidays below.

Our Holidays

Backing up to November, our Thanksgiving: we spent Thanksgiving Day with my family at Dan and Geniene's and with Jeremy's family at our house that weekend (it was our first year hosting Thanksgiving!). Both times were enjoyable having family around, counting our blessings and stuffing ourselves silly.





We had a great Christmas! Busy and quite tiring, but it was nice being with family all in one place. We had our own family Christmas on Christmas Day. The next day we drove up to Amsterdam, NY to spend Christmas with the Gregsons. We had Christmas with my family on the Saturday after Christmas Day. That was a lot of fun because had the entire family together, which rarely happens. And we had two new additions to the family this year, Jarid (Tiffany's fiance) and baby Abigail. It was a little chaotic with three toddler boys running around, but I think it worked out just fine and, of course, they had a blast playing together. It was a very full, very loud household and everyone had a nice time. Sunday afternoon we drove down to Jeremy's parent’s house. That was nice too, but very different dynamics. It was a little more relaxing there, much quieter, but we were all already VERY tired and trying to keep awake while opening gifts. We had Christmas with the Riggalls on the Monday after Christmas Day. We drove home that evening. We were all very happy to be home in our own beds! When Jeremy and I got in bed, we thanked God for our wonderful home and bed!

Tuesday, January 13, 2009

And We're Back

Well, we're back. We're so sorry for not updating sooner. We haven't forgotten. It's just that it's been one thing after the other ever since our daughter has been born in November. We will try and update all of our news since then in the next few postings as best as possible, but for now a video.
Jaron sings! See if you can pick out the tune.


video