we celebrate!

almost 6 months.

HELLO dear friends of Elida.

It has been a busy couple of months since the last post, I am quite sorry to keep you in the dark about her progress for so long! Just because there is SO much to share, I am going to resort to bullet points. (I promise not to make a habit of this. Honest.)

• Elida has started FEEDING THERAPY! After a semi-successful swallow study, we can now begin very small feedings by a bottle. Last week Elida drank 4ml of milk - with no coughing or gagging! We both got a little teary eyed - we are just so proud of her. She has already come SO far... it is just thrilling to begin working on something that will be so very important in her future. 
• Elida does NOT NEED HIP SURGERY! Praises be... her dislocated hips are healing on their own (with the help of a brace she wears while sleeping at night). We could not be more excited about this news, it spares her from 2 surgeries as well as 6 months in a full body cast, oh my.
• Yesterday, Elida started playing with her toes. He he, I just had to put this in - because it is so dang adorable. 
• We got the further testing back from The University of Iowa. It showed that the root of her disorder is in the make up of two different types of protein in her muscles. This does not really tell us a whole lot more about her prognosis - HOWEVER - we learned that this type of disorder is not degenerative. Though we still do not know how strong she can get, we do know that what strength she gains is hers to keep. HOORAY - there is so much room for hope and faith in this!
• Her occupational therapist is now "taping" her wrists, fingers and diaphragm. After just a few days of having her tummy taped (you can see a bit of the bright pink tape in the photos below) she started talking so much more - the tape keeps those muscles engaged - the results of which are incredible. Seth says that she "has really found her voice" - has she ever. In the past week she has begun to giggle a little bit too. Elida continues to be such a happy little lady.

The unbelievable progress that Elida has made in the last 6 months deserves grand celebration. We hope you will all take a moment to feel the goodness and delight that we feel - and raise your glass to hope and her continued healing and strength.

Thank you for your prayers, well wishes and friendship. 

Sending love.

4 months old!

new news.

Hello friends. It has been too long - and there is a lot to share with all of you about Elida. I will get the news about her muscle biopsy out of the way, and move on. The biopsy did in fact show that Elida has a muscle disorder. While this news did not come as a shock to anyone, it was devastating, none the less, for Seth and I, along with our families, to hear.  It has taken a few weeks for the news to sink in, and for us to adjust around the fact that we now have a general diagnosis. We do not know what kind of disorder it is - in fact, the biopsy came back as "inconclusive"... again, the doctors are encouraging us to dig deeper for further understanding, and so the biopsy is now in Iowa for further testing.

This place (of waiting) continues to feel very uncomfortable - especially because we are struggling a bit with how further information will be helpful for us. Without getting into it too much - the long and short of it is that there is a huge range of disorders that Elida might have - but no matter which one- we are told that we will treat her symptoms the same. We are going to do PT and OT and love the goodness out of our sweet girl, no matter what. I, in particular, would like to avoid the emotional set back of a detailed diagnosis that could leave us feeling hopeless.  I guess it is hard to see the use in what I expect could be a terrifically difficult burden of knowledge to bear - especially because right now, she continues to show us that she is capable of getting stronger every day.

In that, Elida is doing just SUPER! I wish we could make tiny Elida's for all of you to have. I mean it, she is just the most delightful little baby. I get the feeling that she is so happy to be here in this world with us. Though her core body strength is still delayed, the tightness in her muscles (especially in her arms) has almost all but disappeared. She waves her arms around and kicks her legs straight up in the air. In the last few days she has begun to twist her hips... the beginning of her will to flip herself over. It is quite unbelievable for us to observe. Again, we are truly in awe of Elida, all of the time.

I think these photos sum it up... in more ways than not, she is a very normal 3 and a half month old. Exploring her world with her fingers and mouth, beginning to chat it up with coos and ahhs, loving picture books and hearing stories, sleeping through the night... (lucky us, right?)

A few other things, Elida has been scheduled for a re-swallow study in September, we are all very excited and hopeful that she might be able to begin some (small) oral feedings if this study goes well. Keep praying! Also, we ended up postponing her surgery to get her hip cast. We all wanted to avoid the complications that happened during her last surgery AND her hips are healing very slowly on their own. So we are keeping her in her hip brace at night, and crossing our fingers that the casting can be avoided all together. Again, we keep praying!

I know that was a lot to fill you in on. It is crazy being back at work - good, but crazy.  I will try to update more regularly. It is very nice to keep you all in the journey with us.

Love and Blessings to you.

the three of us.

lovely sleeping in a sling.

first dinner at home.

Elida loves papa's beard.

We have been home with Elida for a week now... and her little body has been healing really well.  The feedings every three hours come naturally to all three of us - a really nice shift from the continuous feed that Elida got from her feeding tube. It goes quite smoothly, we simply hook up a short tube into her "button", fill up a syringe with breastmilk, and let gravity gradually fill her belly!

I (amelea) am going back to work tomorrow, high time after an extra month off - thanks to a very generous staff at ArtPrize. It has been a fabulous three months, despite all of the unexpected challenges that we have all been faced with. Seth has promised to take Elida downtown anytime I need a family fix during the day.... which is very encouraging being that there will certainly be some long days getting ready for the big event.

A few other updates - in case you are wondering where things are at. Elida is scheduled to get her hip cast on a week from Tuesday (August 9th). We have a consultation with the surgeon tomorrow and will know a bit more of what that will be like soon. After the complications that occurred during sedation with her last surgery - we are quite concerned about this again (putting on the hip cast requires sedation - boo).  We are insisting the the ENT (ear nose and throat) Doctor that saved the day when things became critical last time be in the room this time around as well ... he has recommended a few names of anesthesiologists that would be better suited to work with Elida... Time for us to advocate for our precious little girl!!!

We start up PT again this week, and are also getting PT once a week at home through a fantastic program called Early On (http://1800earlyon.org/). We notice that Elida is moving more and with more enthusiasm as we work on strengthening her core muscles - especially her neck, as well as her arms that are still showing limited movement as a result of her arthogryposis. I apologize if all of this is at all confusing, it is hard to know how much to explain without repeating the same thing over and over. PLEASE let us know if you have any questions about how Elida is doing - we certainly love knowing that you all care for her and that you are keeping up with her progress and praying for her continued healing.

Blessings from our home to yours.

feeling great - heading home!

hi.

we wanted to let you know that elida is feeling great and doing fabulous with her feedings - we are headed home this evening! she is back to her happy self - evidence above.

peace.

What a little trooper she is.

 

An update post surgery - overall Elida is doing just super!

The G-Tube/Nissen procedure went really well, she has been getting food into her new stomach port for almost 24 hours. Right now it is still pumping food constantly - hopefully by this time tomorrow they will begin to condense the feedings so that we can get her off the pump.

There were some complications that occurred when they were intubating Elida before the procedure. They needed to intubate her to support her breathing while sedated. Because of the unique anatomy of her airway, they had great difficulty getting the tube down. It became a critical situation in which they needed to call in an Ear Nose and Throat specialist to come in and place the tube in with a scope. Once Elida was stable they decided to go ahead with the surgery as planned...

Other than some swelling in her throat that is causing her a bit of discomfort she is doing just wonderfully. They moved us from Intensive Care to a regular room here in the new Children's Hospital, which is really nice for us all (and reassuring that all is moving in a good direction!).

We are enjoying a delightful view of the city from our room here... and look forward to heading home in a day or two.

Thank you so much for keeping us in your thoughts... we are very aware of the goodness that surrounds Elida - right now we certainly feel that many prayers have been answered.

July 19th - Elida gets her Mic-Key button.

Being that Elida was born with a "weak swallow" she needs to avoid feeding orally until it is safe for her to swallow. This is why she currently has a feeding tube, and why she will be getting a Mic-Key button next week. The Mic-Key button will work along with the G-Tube as a port into her stomach, which is how she will be feed until she gets stronger.

Elida has been big enough for this surgery for the past few weeks (she is now 10 weeks old and 8lbs 11 oz) but we decided to hold off a bit longer as the bigger she is, the less risky the surgery becomes. Though putting in her G-Tube is a "routine" procedure, we are told that things go better post surgery for larger babies.

We have set the date of surgery for this coming Tuesday, July 19th. While we are looking forward to having this procedure behind us, we expect that her recovery will only be a few days as we are told she will only need to stay in the hospital for two nights - and this time she will have her own room so we can stay with her - what a plus!

Please pray for our sweet little one - this procedure will make all our lives quite a bit easier, but is scary none the less.  Also, because we continue to observe a lack of appropriate muscle movement, we are also going to have a muscle biopsy done at this time. We would also appreciate good energy sent our way for this procedure as well. It could provide some answers about Elida and why she was born as she was - but test results are always unnerving to anticipate.

Thank you dear friends and family.