Join us in praising God for His provision!

Praise God today we paid the last of Alegria's hospital bills! Thanks again to our brothers and sisters at Samaritan Ministries who helped to provide for our needs! 6 years ago we chose to become part of this ministry instead of having health insurance. We have only a couple more small bills to pay, and then Alegria's $100,000+ medical bills thus far will be taken care of completely!

Amazed at God's provision and care,
Jill

G-tube Questions???

The new button seems to be an improvement, but we are certainly still in the learning/adjusting phase.

Okay I know that most of you reading Ali's blog have never had to deal with a g-tube, but I have a couple questions for those who have.

When I vent (ie. burp) the new AMT g-tube, it is much easier to get the trapped gas out of her stomach and into the tube, but just like Bard the gas still just ends up trapped in the tube without much escaping unless I vent her and then detach the tubing, reprime it, and reattach it. The pockets of air ALWAYS seem to be the last thing out of her stomach. Is there an easier way to do this? Is this because she is getting breast milk instead of formula?

Thanks,
Jill

Quick g-tube update

We are back home again. She did fairly well, no more episodes even though it certainly hurt. Thanks for praying.

First impressions, this new g-tube is certainly much easier to burp (once it is connected), but it also is a bit more challenging to connect and disconnect, hopefully we will learn to do it a bit quicker. It does have a higher profile though so we'll have to be a bit more careful with it too.

Another quick praise, Samaritan Ministries called today to let us know they have agreed to pay for the apnea monitor, oximeter, suction machine, and oxygen in full. This is a wonderful blessing as medical equipment is not automatically covered for subscribers!

Jill

New G-tube tomorrow.

Alegria has an appointment with the surgeon tomorrow to switch out her g-tube. Al is taking the afternoon off, and he and the children will be driving with us to Ft. Wayne this time. This procedure is basically the same as when we switched out the PEG tube for the button. It is painful for a few minutes, and I would greatly appreciate prayers that Alegria will tolerate it well like last time. Thankfully though this time we will be switching to a balloon button which will hopefully not be at all painful to change in the future.

It is pretty amazing how God worked out the details on this one. I had had some frustrations with this button all along, but it was continuing to get worse. A month after the Bard button was placed, it began leaking intermittently, and at two months it was leaking anytime it was uncapped, and now it often leaks even when capped. The stomach acid on her delicate skin is very irritating and I finally realized it wasn't worth trying to make it work any longer. I prayed for wisdom, did my research and decided I wanted to try an AMT mini-one balloon button. About ten days ago, I called to ask the surgeon to switch it out. This is not a brand the doctor typically uses, but he was willing to let us try it anyway. The doctor wrote the prescription (which is required to purchase one) and faxed it to the home medical supplier we had been using. This supplier has worked very well with us as self-pay as has given us significant self-pay discounts with almost everything we have purchased from them thus far. Last Thursday, they finally called with the details. List Price was $675!!! but they were willing to sell it to me for less than 50% of that, BUT they don't carry them in stock. This meant that instead of receiving it within 3 days like most everything else, it would likely take 2 more weeks! I was fairly frustrated, and I wasn't really willing to wait. I considered just purchasing my 2nd choice (a Mic-key g-tube button,) but I called Al first to see what he thought. He said why don't I just but it from somewhere else. Funny I never thought of that! Then I remembered reading in the AMT literature, you could buy directly from the manufacturer. So I called them and explained the situation and asked if it would be possible to purchase from them directly. No problem! What was the cost and how soon could I have it? $108!!! and it arrived the next day! Isn't it amazing how God works even frustrations for our good?

Alegria had a fairly easy weekend, and we were able to finally head over to my brother Mark's house for an afternoon on the lake (we have been trying to fit this all summer.) It was very fun and refreshing. Alegria stayed on shore, and Al and I took turns taking the other children out on the boat with Mark and Stacey. The six oldest children and I all tried tubing for the first time. I hope to get some pictures up soon over on our family blog.

Alegria continues to gain more muscle strength and coordination. She is also cooing and interacting quite a bit these days!

Prayer Requests:
The changing of the g-tube will go smoothly tomorrow and that Alegria will tolerate it well.
The new g-tube will significantly help the reflux.

Thanks,
Jill

Scary Episode Part 2

Well we had another similar episode today, but we continue to thank and praise God that Alegria has come through both episodes well!

Both days I had been trying a different new suction machine attachments as we were having a minor issue with the old ones. I tested both parts before a crisis arose, and they both seemed to have their benefits. Unfortunately, neither seemed to work well for me when she was actually throwing up. I have now gone back to the original attachment. I am hoping that this was the only problem will be resolved by the switch.

Prayer Requests:
That Alegria's airway and lungs would remain clear and no more major episodes
The upcoming button switch will be well tolerated and help the reflux significantly
Wisdom, guidance, and skill in making decisions and caring for Alegria
That God would enable me to rely on His strength alone.
The peace that passes all understanding

Jill

Praising God after a scary episode... UPDATE

Thank you all for your continued prayers and encouragement!

We have monitored Alegria very closely since the episode yesterday, and she did very well last night and continues to do well today. This is such a blessing! Her oxygen saturation has stayed in the high 90's. She has not had any more vomiting, and she has been in such a good mood. Cooing and wiggling all over the place!

I am truly thankful for all the equipment we have available to us! I had wondered how I would react in an emergency since we had not had to actually use the oxygen/ambu bag since we received the training in April. Praise God the children and I all worked together to accomplish exactly what needed to be done. The whole episode lasted less than 5 minutes I would estimate. It only took one blow of the ambu bag to get her to start breathing on her own and she immediately pinked back up and was at 100% Saturation once we got the oximeter on her. While it was extremely intense and I hope to never have to do it again, I am at the same time very thankful that the last episode was over 3 months ago. When we last left the hospital, we were talking about the frequency being measured in how many times per DAY or WEEK!!! I have also communicated with other parents whose children have trisomy 13 who have had to use the ambu bag far more frequently than us, so honestly as overwhelming as it was, Alegria is still doing great!

This episode was again directly related to the vomiting, complicated by the fact I also had switched an attachment on the suction machine which did not seem to work as well unfortunately. Last night I ordered several new (hopefully better) attachments (Thanks again Connie!) Also switching out the button next week should hopefully reduce/eliminate the episodes of reflux/vomiting by making it possible to constantly decompress her stomach.

Ali continues to visibly grow stronger each day. Please continue to pray that God would continue to help her grow healthy and strong!

Thanks,
Jill

Praising God after a scary episode...

Praise God for all the equipment we have at home! Alegria vomited and neither she nor I could clear it quickly. We ended up needing the oxygen and ambu bag. Thankfully she immediately responded. The other children all helped immensely, and we all thankfully knew exactly what needed to be done. I would greatly appreciate prayers as we all recover tonight!

Jill

A time to sew...

My sewing machine has had little use lately, but thanks to idea based in part on a comment from another mom with a child who is tube fed (Thanks Connie!) I have made a disposable pad for around Ali's g-tube button. It is absorbent on the bottom side, but waterproof on the top side.

It is recommended to use a gauze pad between the g-tube and the skin to give the skin a little protection. We have done this when she is having a problem with granulation tissue. But now that valve is leaking, the gauze was not helping because it was just holding the leakage against the skin. The leakage contains stomach acid and is very irritating making the granulation tissue even worse.

So, I had an unused box of disposable nursing pads, and started brainstorming how I could make them work to meet her needs. After several prototypes and my husband's suggestion of breaking out the sewing machine, we have created the perfect pad for Ali! The underside absorbs any moisture from around the stoma and the upper waterproof side keeps the skin protected when the valve leaks. The granulation tissue is improving already!


We still plan to replace the button next week, but this will keep her more comfortable while we wait.

Praising God for yet another answered prayer!
Jill

Praising God for a Good Week!!!

Alegria has had a good week this week for the most part. She has only been having severe reflux about once a day. While that is still more than I would like, it is SOOOO much better than what it has been at times. This change alone has freed up my day significantly! Alegria still gets held A LOT, but I am more comfortable laying her on wedge to sleep for a bit while I get some work done.

We did decide to switch out her g-tube button in 2 weeks. The old one has many issues we hope will be resolved by switching to an AMT Mini-One balloon button. It is not pleasant to remove the old Bard button, but it is causing her a lot of discomfort right now, so we feel it will be worth it in the end.

We are going to also to be trying out another attachment for her g-tube too called a Farrell bag which a sweet online friend has suggested and offered to send a sample (Thanks Jennifer!) These are supposed to help by creating a way to constantly decompress (ie. burp) her while feeding thus eliminating the gas build-up. This too sounds very promising!

And I've had a far more restful nights this week too! Last night I had a total of almost 7 hours sleep split only by an hour long feeding :-)

God has answered every one of my prayer requests from last week!!!

Ali continues to daily grow stronger. She is controlling her head much better now. She also tries very hard to lift her head, neck, and back when she is laying in an inclined position (like on her Tucker Wedge). I think she would really like to sit up, but doesn't have coordination quite yet, so she ends up throwing herself to the side instead.

Alegria has another chiropractor appointment on Tuesday. Hopefully this will continue to help her reflux too.

This week's prayer requests:
Continued Improvement in Reflux and digestion
Improvement of the painful granulation tissue while we wait for the new g-tube.
that Ali continues to grow healthy and strong!

Thanks,
Jill

More pieces in the reflux puzzle

We still are dealing with reflux and some feeds, some days, and some weeks are better and some are worse than others. Some days feel almost normal again, other days are spent monitoring her very closely. Last week was filled with some of both. I finally realized that there is no "magic bullet" with this reflux. It does not just have one cause which once I figure it out will take care of the entire problem. There are numerous important variables.

Now I am still confident that she has food allergies/intolerances and we have been combating that by changing my diet and adding an herb which helps reduce allergies. I am also fairly confident that at times my milk has been too acidic and we have been attacking that with apple cider vinegar. I know she ALWAYS has gas trapped in her stomach WHEN she refluxes, and I am working on making sure she burps well and also by watching that aspect of my diet also. But last week we did find another piece to the puzzle. Ali had her first chiropractor appointment with Dr. Garl. He found that her hips and spine were out of alignment. It is my understanding that being out of alignment drastically effects digestion, and we did see a drastic change in Alegria immediately following her appointment, so I am hoping and praying we will continue to see improvement as she sees Dr. Garl again next week! Since the first appointment she has only refluxed on average once a day where it was much more frequent the days before.

One area we are having more struggles with is nighttime feedings. While I am probably getting more sleep now than when she was first born, I am feeling very exhausted lately and having difficulty waking up in the middle of the night (except for when Ali pulls her leads off and sets off the very LOUD apnea monitor!) We are strongly considering purchasing a feeding pump to feed her very slowly, yet continuously through the night which would make night feeding much simpler for us both. This would also make it easy to feed more quantity through the night, and thus smaller quantity bolus feeds during the day which in theory should help with the reflux too. One concern though with feeding her continuously through the night is the small risk of her refluxing while I am asleep.

Also I am considering switching the type and size of g-tube we are using. Unfortunately the one she has (a Bard Button) leaks significantly, and it is also slightly too big. Both of these problems complicate caring for her stoma (skin around the g-tube) which often makes her uncomfortable. While I am not excited about switching this one so soon (we had hoped it would last much longer), I also do not want to try to just tough it out at her expense either. Also a different button would make burping her SOOOO much easier (another wonderful benefit!!!)

So prayer requests are:
Continued improvement in the reflux
Wisdom in decision making
Rest :)

Thanks,
Jill

5 month old photos :)

5 months old today!!!

Today we are praising God that Alegria is 5 months old!!!

We are in the process of trying to take some pictures and I will hopefully have them uploaded by tonight :)

Quick Update...

Overall, Alegria is doing much better than a month or two ago, but this week has had its ups and downs for sure. And we again dealt with more reflux than last week.

Her reflux was doing really well with the elimination diet, UNTIL I started trying to add things back. It is certainly a lot of learning by trial and error! I am trying to figure out right now how I can get some vitamins back into our diet without upsetting her tummy. She doesn't seem to tolerate the EFAs in pill or liquid form, but seems to be tolerating salmon which is very high in EFAs, so I am eating lots of salmon these days :-)

But she continues to grow stronger each day and it is such a joy to see her learning new things. This week she tracked a toy with her eyes as we shook it in front of her and she is beginning to gain coordination and strength in her neck muscles.

I love watching our next youngest daughter Anica (21 months) play with her little sister. She calls "Ali Ali" and then shows her a book or brings her a kitten to see. She loves giving her kisses too which is very sweet!

Jill