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Archive for August, 2010

Alyssa will be attending a different school this year. When I initially found out I took a day to be sad. Janet (her teacher from last year) is just such an amazing and caring person that she has left huge shoes to fill. I spoke to Alyssa’s new teacher on Monday and she seems very nice. It is still going to take some adjusting though. Also, it just seems like so so very much to have to “dump” on someone. Right now there is *so* much that is up in the air that I don’t even have a full grasp of what is going on with my kid. LOL! Maybe a stranger will be better suited to just take things as they are.

We went to open house today. Neil even got home in time!! It was a bit chaotic because all of the AM and PM kiddos were there.ย  However, we found out that as of now there are only 5 kids in Alyssa’s class. It is quite exciting that she’ll get to begin with such a low ratio of students to adults. The aide asked us during open house if we had time to hang out after to talk. Of course we did. We sat and chatted about the Cliff Notes version of Alyssa. I always feel like such an over talker…because there is *so* much information! Especially right now. We talked about goals and outcomes and just working on making this year the best it could be for now. I offered to come into class for the first day or two but the teacher would rather see how Alyssa does. I know she’ll do fine and I’m respecting the fact that we are coming in at the start of a new year. Last year the kiddos that were already in class had their routine established. It would stink to make adjustment harder for other kids. Plus, we have phone contact and of course e-mail. Overall, if I’d never met Janet I wouldn’t have been even a teeny bit sad that Mrs. K was Alyssa’s new teacher. Afterall, she is a nice woman who seems caring and kind. Additionally her aide seems super sweet as well. However, knowing Janet… I was a little …ok a LOT sad. I fought back tears but I know that Alyssa will have a great year. Also, on eof the little boys in her class was in her class last year ๐Ÿ™‚ So, that is awesome!

On a completely different note, feeding is still a bit problematic. However, she is definitely vomiting less. We’ll get there! One day at a time. I am going to call Windrose and see if maybe they have some advice. ๐Ÿ™‚ They are so nice!

Now… we just have to survive the weekend and it’s back to school!!!

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and we knew it would. Each day is a bit of a sign that things are on the “up.” However, there are going to be days where she is detoxing. Today was a rough day. Alyssa is vomiting in a way that looks …beware… TMI… almost like yogurt. Like, if you dumped a container of yogurt out of the floor it would look almost the same. We’re remaining calm and reminding ourselves that we are not going to undo 3 years of intestinal drama in a week. It’s going to take time, patience, and readjustment. However, the changes that are already happening in her are proof enough for me that this is a step in the right direction. The thing with Incontinentia Pigmenti is that the doctors are never certain where things are going. Alyssa doesn’t have a book written about her… we are writing it one day at a time. I’m just so grateful that the people who are helping us to fill the pages are such positive and awe-inspiring co-writers. We are truly blessed every.single.day.

The best part of today was we got a chance to get out and celebrate my birthday with friends and some of the family. We hit the strip and went to Serendipity 3. If you’ve never been there? GO! They seriously have so much deliciousness under one roof that you’ll never grow tired of it. I’m grateful it’s on the strip, because if it was down the street? I’d weigh 800 lbs! HAHA!

Becky and I being cheesy about an oreo frozen hot chocolate. Really… I’m not kidding about the 800 lb thing! HAHAHA! It was a great time with everyone… despite Alyssa getting sick just before we entered the restaurant. Although, I’m pretty sure she was not the first person to toss her cookies on the cement on the strip. ๐Ÿ˜‰

At the end of the day we put our sweet lady down to bed and decided that we will call Windrose and see how they feel about the fact she’s still spitting up. Despite the fact she isn’t lactose intolerant… I’m thinking she may need something easier to process for a while. Milk is never delish on an empty stomach! I’m loving that our sweet girl snuggles into us more than pulling away from us now though. It’s like her ability to relax is up a ton. Little by little!

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Well, originally when I knew I was flying home on my birthday I was thinking that the day would not be so incredibly filled with utter awesomeness. However, it was a fantastic day. I woke up and rolled over to grab my phone. As I scrolled my facebook wall I got a bit…ok a lot… teary reading heartfelt messages from friends and family. It was an astounding way to start the day. The first big treat of the day was Alyssa sleeping in. As in, I got up at 830 and took a shower all alone, got dressed and ready, and woke her up at 9. It was a delightful start to the day. I swear, at some point in parenting … or in life in general… you reach a point where it truly is the smallest things that make your day seem so much better.

My friend Cheryl is pregnant with her fourth little one and she scheduled her ultrasound for today so that we could all go together! What a delightful treat to be there the moment one of your dearest friends is going to be welcoming her first little girl into the world in a few short weeks. Now, mind you, Cheryl was hoping for a fourth boy. However, I think the prospect of hand-me-downs from Alyssa softened the blow a little bit. ๐Ÿ˜‰ After the ultrasound we all went out to lunch and then back to the house to spend a few hours with Jada and her kids. As we sat and chatted Alyssa napped and gave me time to pack amidst the chatter. The reality that I had to leave begun to sink in. It’s such a crappy feeling… and such a hard one to explain. I miss my husband and family so much but at the same time I know once I leave my friends I’ll once again be so very far away. Thank goodness for the internet allowing us to stay in contact. At any rate, before we left Cheryl wanted to get pictures of me in the shawl she made. I obliged complete with the typical sideways glance that you’d typically see on a yarn site.ย  HA!

Yes… she made it. As in, she got the fiber, spun it to yarn, and knit it in the most amazing manner. It’s simply gorgeous and she got the fiber dyed in my favorite colorway from Julie’s repertoire. It’s simply stunning! Julie got me a matching shawl pin. I’ll have to go to a cooler climate soon so I can rock it in public. Until then it is like a big friendly hug on days that I’m struggling.

After pictures had been taken and goodbyes had been said we loaded down the car to head to the airport. The best part of flying with a special needs child, her wheelchair, and her carseat? Is DEFINITELY the fact that your friend gets to spend time with you until the moment you board. It was the only time I’ve ever been grateful that a flight was a bit delayed. I fought back the tears as we said goodbye and Cheryl fought them back as she had to pull Alyssa’s hand off of her own. Southwest airlines gets a shout out here. They are amazingly accommodating. We preboarded and the flight attendant hung with Alyssa while I buckled the carseat in. We got the very front row of seats and since the flight wasn’t completely full the flight attendant let me spread out and take three seats! She had the greatest personality! She was cracking jokes during the announcements and we chatted a bit during takeoff. Alyssa fell asleep not too long into the flight and I decided it was my birthday and I deserved a drink! It was the first time I ever ordered a drink on a plane and it was nice to sit, type away on the iPad, and just relax. Alyssa did swimmingly well and we actually wound up getting home close to on-time! A very nice gentleman helped us down to baggage claim and we were reunited with the main man in both of our lives.

That smile? Is reserved just for Daddy. I didn’t see it the whole time we were gone. Don’t get me wrong… she smiled… she giggled…etc. However, it never looks just like that! That one is only Daddy’s! It was so good to get a big bear hug from my husband. As much as my friends do an amazing job of holding me up? No one loves me quite like he does.

Just when I thought the day couldn’t get better? I came home to a completely clean house and a cake that Raina had baked just for me!!! It was the perfect end to the perfect day. Neil put his sweet girl to bed and I got a chance to tell him all about our day. It was a fabulous birthday! I’m so grateful for friends and family who love us!! Here’s to a great year!!!

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even when we don’t think we need anything at all. Really this week He has proven again and again that he’s got our backs. I flew to a state that I had never visited, to stay with a family I had never met in person (don’t worry we’ve talked for well over four years ๐Ÿ˜‰ ) , and got answers from people I had just met. You wouldn’t be able to convince me that God wasn’t stirred through all of this. I know that He set up so much of what got us to that point. Including the woman that told me about Windrose living in the same city as the clinic and making a visit out to see us back in January. We are truly truly blessed.

This morning we woke up after a restful night of sleep…well at least Alyssa’s was… I may have stayed out too late with the girls! We had decided to go to church with my friend Jada and her family. We used to go religiously (heehee yes that is an intentional pun) until I had a bit of a falling out with our local pastor. It had been a long time since Alyssa had been in church and a long time for me as well. The music in the beginning made me a bit emotional…but nothing could compare to the tears I cried holding my little girl. It’s so amazing to me that my little girl who is fighting so many internal battles can still manage to smile. As I stood listening to the pastor pray… I began praying as well… with my daughter melted into my shoulder. I sobbed. Those of you who have held my daughter know that she does NOT melt into your shoulder. She is one to throw herself back, or lunge for the ground, or otherwise try to be hard to hold. Instead? In that moment her little body was content enough to snuggle into me as I prayed.. and in my heart I just felt this complete sense of peace. This next few weeks or even months are going to be hard. I know that. However, I also know that we have received answers that will forever help us to give our little girl a better quality of life. She’s been so much more relaxed this last couple days. I know the excessive amount of sleeping will wear off but I also know it’s a sure sign that her body is taking the time to repair itself. Afterall, even Cheryl’s cat wanted a chance to snuggle!

Jenn loves Alyssa

We made it to the end of another day. God willing the rough days will soon be a thing of the past and we will get to revel in what a strong and amazing girl Alyssa truly is…not that we don’t do that already. ๐Ÿ˜‰ Today was such an empowering and delightful day filled with friends. I’m so overwhelmed that even being so far away from home, while going through such an emotional time, we are still wrapped in so much love. I’ll never be able to express to the families that I spent my time with on this trip just how much their presence and acceptance made all of this as easy as it could possibly be. I’m forever grateful to be surrounded by people who’s hearts are so open to helping the people around them…and grateful to be around them!

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and it is certainly not going to be the easiest of roads. I know that it is going to take time. We’ve decided we will give all of the supplements, milk, etc one month to reestablish our “normal.” Afterall, there is going to be detoxing, digestive stuff that has to rebuild, and all that fun and exciting stuff that comes with reworking your child’s entire diet.

Last night was not easy. I put 1 part water and 1 part milk into the feeding pump and let us just say that 330am-500am was a long hour and a half. I stopped the feed after that and called it good. We slept past 8 which surprised me a bit since I had pulled Alyssa into bed with me after the “excitement” of the midnight waking and there is sun that comes directly over the bed. At any rate, after the few hours of cuddly sleep I felt better. In the middle of the night I was feeling discouraged and defeated. However, I know full well that this will not be an overnight *fix* but I am confident that long term it will be better than we could ever imagine.

Luckily, despite doing a lot of processing we are also surrounded by our amazing friends. My friend Cheryl’s 4-year old has been so good to Alyssa. Seriously the way he loves her makes me a little teary. He’s been such a good helper. He gets so excited when I mix her meds. He comes over and sits beside me and pushes the meds from the little syringes into her G-tube syringe. It cracks me up how much he enjoys helping. Then, this morning while we were letting her tummy settle he opened a book and started “reading” to her… my heart was a puddle as Alyssa listened so intently to his reading. ๐Ÿ™‚

Storytime

The day wore on and mixing the milk 3 parts water to 1 part milk she tolerated quite a bit of fluid. She actually passed out in the center of the living room with 3 adults talking and 3 kids playing. Alyssa is not a kid who wants to sleep through things. So, I’m starting to get really excited for her little body to detox and heal. As hard as this is, I feel so much better knowing that what we were doing was “wrong.” I know, that sounds silly! The reality of it is that since we were doing something “wrong” then we have the opportunity to do things “right!” Afterall, if Dr. Tish had simply told me the same things we’d heard for years? I’d still feel just as lost as I did three days ago!

As silly as it may sound I’m relieved to know we were wrong and now we can start working on making things right! We made it to 6PM this evening without her vomiting and since I’m going to be out of the house this evening I’m going to give her tummy a rest and skip the overnight feed. I’m thinking a good night of sleep will do her well.

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AKA The day I discovered that everything we thought we knew… we didn’t know at all.

The night before I brought Alyssa in for her initial appointment I filled out paperwork with as much detail as I could recall. Under “Any known food intolerance?” I wrote “Dairy.” Why? Well, simply put that was the one thing I thought for certain was a given. We switched her from standard formula to soy at approximately 6 months old to try to curb the constant puking and feeding issues. It did not completely alleviate them but there was definitely marked improvement. The years passed, she got a G-tube, and wound up on a hypoallergenic diet. This whole time we thought she was dairy intolerant. After all, if she came in contact with milk she suffered from major gastrointestinal upset and little red splotches on her face.

With that in mind, imagine my surprise when I sat down across the desk from the doctor this morning and heard “Alyssa has two main intolerances, potato and soy, as well as a combination intolerance of fruit and sugar.” I processed for a second and said “Wait. What about dairy?” Yeah, it turns out that it wasn’t the dairy itself Alyssa was reacting to but the vitamins grown on potato base that are used to enrich most cow’s milk. Couple that with the fact that every formula on the market, including hypoallergenic ones, contain potato, soy, fruit AND sugar! This amazing woman who sat on the other side of the table had assembledย  a game plan that will manage to allow Alyssa to be g-tube fed and still receive all the nutrients she requires. However, I think I’m getting ahead of myself. So, let me slow down… it is a bit more challenging with all the excitement.

Alright, rewinding a bit. With this method of testing most people have one main intolerance and one combination intolerance. Alyssa, true to form, has two main intolerances. This means that potato and soy are both unable to be metabolized in her body. Now, when you think of potato you think of the major things that contain potato and they are no big deal to remove from the diet. However, the harsh reality is that potato based products are EVERYWHERE. Anything that says “enriched,” ziplock bags, Gerber baby food, bottled water, etc etc… the list is astoundingly long. Furthermore, since it is typically less than 2% of the contents of products companies don’t have to list it as an ingredient. Couple that with all of the things that contain soy in all it’s forms and you can begin to understand the vast amount of food that inhibits her ability to digest and metabolize vitamins into her system. On top of not being able to digest these they also cloud her whole system. Her body is working and struggling to digest stuff that it simply cannot. As overwhelming as all of this information was? It also made me sigh a sigh of relief. It wasn’t the “same” answer that we’ve had for everything. It was DIFFERENT. It meant that the things we were doing were wrong and could be corrected and hopefully improve her quality of life!!

OK. So… how do we do no soy, no potato, and not mix fruit and sugar … while STILL maintaining the proper level of nutrition? It isn’t going to be easy or an overnight fix, but hopefully soon the time that goes into preparation will be canceled out due to not having to clean up vomit multiple times a day. There is a mix of vitamins, supplements, minerals, etc that will be ground and given a couple of times a day. In addition her milk will be enriched with agave syrup (considered neutral and not fruit or sugar) to aid digestion as well as cod liver oil. All of the vitamins are potato and soy free. The vitamin C does count as fruit but it shouldn’t be too big of a deal to keep her away from sugar for 8 hours after it. ๐Ÿ™‚ We can plan on birthdays and such to give it to her at a point when it will be 8 hours until sugar.

All-in-all I’m overwhelmed but excited. I think that this will be a pivotal day in her life. A day we look back on as the day things never looked the same. I’m so grateful for the people at Windrose and my friends in Spokane who have opened their families, hearts, and homes and made this seem *so* much more manageable than it would without them! Thanks for all your positive thoughts and encouragement! I’m going to try to update as frequently as possible as we make the transition into ourย  new “normal” because I have a feeling there are going to be *a lot* of changes!!!

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So, we had our initial appointment today and it went really well. I felt like I had to dump a WHOLE LOT of information onto the doctor for one day. However, she was kind, gentle, and understanding. We talked about what things had made things easier for Alyssa, what had made it a larger challenge, etc. She listened intently and gave me some good feedback as well. The interesting part was just reading the side label of Alyssa’s “hypoallergenic” formula she was able to tell that at minimum it has potato, soy, fish, sugar, and meat components. She did the blood tests today and we go back tomorrow for the results. How so quickly? She is the one that does them.ย  Honestly? She is so awesome. I was overwhelmed, still a bit jumbled from the flight and worried that I would forget something.

I’m excited to see what tomorrow brings. It will probably mean hand making food to go in Alyssa’s overnight feed but I would be more than willing to do that if it meant that her quality of life would be improved! Tonight I will go to bed hopeful for what tomorrow brings!!

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