Posted (Tina) in All Posts on May-13-2012

I know it has been an eternity since we’ve posted. Our lives have been busy!

One of the big things that came up at the end of January: Josh had a sponsored work trip for Whistler in Canada where spouses were invited too. We knew this would be a great motivator to try and figure out a way for us to attend. Of course, we had never left Ella with anyone; it was a bit scary to consider. But we knew it was a healthy choice for us to make. The only way we even considered it is that we had someone in mind that we would trust completely to take care of Ella while we were gone for 4 days. We’ve been so blessed by our friend Karen. She’s become so integrated into our lives with Ella; it’s strange to think we only crossed paths about a year ago in January when Ella was in the hospital last. Her time with Ella started slowly last spring while I was here at the house, then graduated to babysitting solo, and now she is our one and only resource for overnights.

So we did lots of prep and training, even had slumber parties prior to the trip. We made sure that we had a Consent to Treat with medical history handy, just in case. It was a bit nerve-wracking because we were technically out of the country and our phones did not work. So it made it a bit more challenging to stay in touch. But the hotel did have wifi and Karen was great to email each day and send pictures, letting us know that Ella was doing well. The great news: it all went smoothly. Kimmie (nanny) watched Ella during the work week days and Karen watched Ella overnight as well as the weekend. Ella was good for both of them.

As far as our trip, I wish that it would have been more fun. Since it was a work sponsored trip, it was pretty fast for a long way to travel and since Josh’s company had just been acquired, he only knew about 15 people total out of 150. And because phones did not work, it made it hard to try and meet new people and coordinate to get together. But I’m proud that we went although it made me realize how much I missed Ella and how much I did not like being far away from her. In the future, I would prefer to go on vacations and bring along a caregiver to enjoy the time with us, giving us a break but still having Ella nearby. You just never know with her and the chances of something happening are definitely greater, so it made it hard to not think about it while we were so far away.

On to health status, Ella has been doing great. Steady and strong. We had an ECHO and that looked good, so then we went to see her pulmonologist. This time last year, we were able to reduce meds (they always prefer to do it this time of year versus winter). So, they figured that they would half her dose of diuretic and sildenafil (pulmonary hypertension medicine that she has taken since the NICU; the medicine that got her to get out of the NICU). Sildenafil basically opens up the blood vessels so they can capture the oxygen and take it around the body. The theory is that at some point when children’s lungs grow enough, there is more surface area and less of a need for sildenafil. Last spring, we were able to take her dose and cut it in half. Since she seemed to do so well, we figured we try that again this year. Unfortunately within a few weeks, we could tell that Ella was not tolerating the change, so we had to go back to the original dose. But at least we were able to reduce the diuretic – this means that she is getting less fluid sensitive. Especially considering that we are giving her more water and she is having less diuretic. So that was a small step forward.

We also went to the GI doctor this spring too. We were starting to have challenges keeping the consistency of her bowels, so we were thinking we might have to increase her Miralax. When we saw the doctor, he recommended doing a “flush”. Ella normally takes 1 cap of Miralax per day; a “flush” meant giving her 3-4 capfuls for 1-2 days in a row and clearing out her GI system. We were not excited at the mess that would cause for a couple of days, but took his advice. Fortunately after the flush, her system returned to her baseline and we’ve been able to stay on one cap of Miralax. The doctor stated that we might even need to do a flush once per month, but so far we’ve only had to do it once. Thank goodness!

Along with the GI doctor, we’ve been working closely with the nutritionist. Ella gained a little bit of weight, she is now 30 pounds. She’s weighed more in the past, but it is a significant gain from a year ago. One that note, the nutritionist put her at the 45th percentile for her age, weight and height. Not too bad considering that there were many months and years where she was not on the growth chart. But the nutritionist still wanted to see if we could beef up her calories, so she asked if we could increase the volume. We tried by giving an extra 50ml per day. She seemed to take the volume fine, but by the end of the 2nd day, her GI system could not tolerate the cumulative impact of the additional food. So, we went back for advice. Instead, she asked if we would try a completely different blended diet that was higher in calories. It requires a bit more work, but as long as Ella tolerated it, it is worth it. Fortunately, Ella did. It includes using only a couple jars of baby food (fruit & veggie), beans, hard boiled eggs, avocados, deli meat, green veggies, base of prescription protein juice (versus water), baby grain, and prescription calorie enhancers. Once she stabilized with that diet, the nutritionist said we should try giving Ella more free water each day. So then we were able to add an additional 250ml of free water. So, her feeding schedule is now just bolus feeds at 10am, 11am, 12pm, 2pm, 4pm, 5:45pm, 7pm, and 9pm. Still a lot of feeds per day, but better than round the clock – we’ve been there before too! And you can tell that Ella tolerates feeds better – not only has there been no retching, but we’ve discovered that Ella likes sitting up on the counter to get her feeds. So now you can use sign language to sign “eat” and verbally say, “Ella, let’s go eat!” and she will grab your hand, actually get excited and walk over to the exact spot on the counter, flapping her arms and ready to be fed! I can’t believe this is the same kid that for 4 years, winced and complained as she would see you coming towards her with food. Praise God! We can only hope that she will continue to gain more weight over the coming months. She has a weigh-in and check up in June.

Speaking of food, Ella has started to make great progress with her occupational therapist. She’s has the same therapist for the past 3 years and it has taken a long time of focusing on tactile stimulation and other areas before we could come back and focus on food. But the past 6 months or so, food has been the focus of the therapy. Whether it is playing with food on the tray, putting some on Ella’s hands and arms for her to explore on her own, moving toward her face, then lips. We’ve gone from peach juice, baby food peaches on her lips, to playing with cheese puffs! Just a couple of weeks ago, her therapist caught a video of Ella taking the cheese puff off the tray voluntarily, putting it up to her lips, licking the cheese powder off it, putting her teeth to the puff, and even rolling it around in her mouth! It stopped there, but still…that is HUGE progress for her! It is just exciting to see progress with food again. It was a long time where Ella would not tolerate any therapies that involved food, so it’s fun to watch progress in this area.

Another improvement for Ella that has to do with her mouth: each morning, Ella use to resist the teeth brushing! She would melt down, scream and fight you off with her arms while you tried to do it. Ella has always loved music and relished when we sing to her. Well, one of her favorite therapists started singing “Twinkle, Twinkle, Little Star” to her during her therapy sessions as a reward. So we started using it while we brushed teeth in the morning and found that Ella started to tolerate it a lot more. And then it just happened over time – now, Ella sees you coming with the tooth brush and actually looks forward to it! Once you sing to her while doing the part you need to, she grabs your hand on the tooth brush and then she wants to try with your help to brush her teeth. It has made one of the hardest tasks with her SO much easier. Once again, small baby steps but very appreciative of the little things we see. Along with the morning routine, she also doesn’t loathe bath time. She enjoys it more. It’s not something she asks to do, but we went from torture, loathing, tolerating and now satisfied with bath time. She’s even graduated and likes to stand in the shower and take one with Mom or Dad!

The one area that is still a challenge and continues to become more and more prevalent: the lack of communication. As she is growing and developing, she wants to express herself and her desires. Over the past year, she has made progress by grabbing your hand and guiding you to what she wants. But sometimes even then, her wants are not always clear. She gets frustrated and has lots of temper tantrums. It is really hard because I can’t imagine not being able to talk and tell someone what you want. But at the same time, yelling and screaming is not always appropriate behavior that you want to reinforce either. So this area continues to be a challenge.

As a follow-up to the developmental tests in January at the Children’s Hospital, they recommended that we change speech therapists and focus on someone with AAC experience (Augmentative and Alternative Communication). Specifically, have Ella get a AAC evaluation and work with her to determine a device that will suit her needs now and in the future. This process has been slow and more tough than we anticipated. We’ve always struggled with making strides in this area. We keep pushing for the therapist to bring different devices, test them, so we can try to get one funded which takes months! We have watched Ella make such huge progress on her iPad and figure out the menu system, swiping, home button, etc. And she is motivated by technology devices, so we feel strongly that this is the way to go with her. We were advised to not use the iPad for her speech device for a few reasons: it is her play toy, plus it is not locked down as a pure speech device, so she can hit buttons easily and find herself in menus that have nothing to do with speech. This makes sense, although some of these “special” AAC devices also are ridiculously expensive – some upward of $5k-$7k. Makes an iPad seem cheap. So we’ve decided that we are going to stick with our current AAC therapist, also get an AAC evaluation at Children’s Hospital to see what they think (they have all the devices on hand), and then research ourselves to see if we can do something on our own since that may be faster. We just need to pick a device and stick with it, consistently. It takes Ella so long to make associations – lots of repetition. So we are anxious to move forward. The one thing that is promising: the AAC therapist brought one device to test and see how Ella would do and within 24 hours, she figured out the button for “more”. This is why we think that we need to find a device and get going!

On the education front, Ella was due for her IEP. She has been in preschool under the same school and therapist for the past two years…and Ella LOVES her ECSE (Early Child School Educator). They have a very special relationship. This year, Ella has made tremendous progress as they’ve worked together. Ella can now take a shape sorter and get it correct 100% of the time and instead of just taking the shapes and tapping them together, she is doing meaningful play. Also, she’s learned to take colored wooden pegs and return them onto the correct color pegs. Now, they are playing with stacking cups and wooden puzzles with shapes. Anyway because of the great progress she’s made, I was not looking forward to the IEP process because it was a transitional IEP from preschool to kindergarden. This meant switching schools and providers. Also, continuing to fight to have home bound services since we still need to protect and preserve Ella’s health. The best news ever: I went to the elementary school down the street, anxious for the meeting and ready for a fight and her ECSE met me. Before the meeting even started, she told me that because of Ella’s age and birthday, we could choose to keep her in preschool for another year and put off the transition for another year. This also meant that she could keep the same teacher for another year. I was elated!

I did learn more about the transition process in this meeting and realized that we may have quite a fight on our hands next year. The home bound program is present, but not as ideal for Ella. Generally speaking, the home bound program across the country in most school districts, is purely meant to service kids that are temporarily ill and cannot attend school. So in the K-12 program, the school district is only required to have a certified teacher come to the home. Usually it is retired teachers that are limited to working a certain number of hours each week. You can hope and pray that they try and find a good match for your child, but legally, they are only required to have a certified teacher. This means that a high school calculus teacher that has no special education experience could be the candidate to visit my kindergarden aged child. Also, this home bound teacher does not create the curriculum. The elementary school staff down the street, who has never had any interaction with Ella would devise the curriculum and guide the home bound teacher. So, I will have to do lots of prep and possibly involve my ARC advocate to see if we can try to make sure that the school district at the very least, sends someone with special education experience to work with Ella. I don’t have to worry about this now until next spring, so I’m thankful for another year with her wonderful ECSE.

Speaking of IEPs, any parent of a special needs child knows that this process is grueling. One thing that is amazing and available to parents in Colorado is the PEP Conference (Parents Encouraging Parents). It is a conference funded and put on by the Colorado Department of Education. The wait list is huge and only a certain amount of parents are selected each year. So, the event is designed to offer support, information, and education to parents and professionals. PEP promotes partnerships that are essential in supporting and including children with disabilities and their families in schools and the community. Three PEP Conferences are offered throughout the school year; one in the fall and two in the spring. The purpose of these conferences is to bring Colorado parents and professionals together to allow them an opportunity to share ideas, discuss concerns, celebrate success, and obtain information relating to parenting, educating and supporting a child with a disability—ages birth to twenty-one. I signed up earlier in the year and was surprised to get an email that I had been chosen. It was at a high end hotel in Steamboat Springs in the heart of the ski resort – and all free. Most of the topics were not new to me, since I plunged myself into this realm upon Ella’s birth and I tend to be a resourceful person. But it was the first time I had been in a room of 250 people and was able to look around and although all of our children have different disabilities, all the parents could relate in one way or another.

Work has been busy for both Josh and myself. During February, March and April, I had several business trips to San Francisco and Dallas. Now this month of May, Josh has 4 trips. We’ve been fortunate to where our travel has been on different dates, so it has worked. Boy, this past week was tough. On Wed, Josh caught food poisoning. Then, Wed night/Thurs at 1:30am, I woke up and started to feel sick, but it was not food poisoning. Josh and I did not even eat the same thing and it had been hours since I had eaten. Long story short, I was in the bathroom a lot and found myself so dehydrated on Thursday that I had to go to an urgent care clinic for an IV and anti nausea meds. I could not even tolerate plain water! I guess it was like a 24 hour bug of some sort, but between Josh and I both being sick, we started to get concerned for Ella getting sick. So thank God for Karen. We called her on Thursday while she was at work and asked if there was any chance she could come over to take care of Ella overnight while we were sequestered upstairs. Fortunately, she was available. Josh woke up on Friday and thought he felt fine, told Karen she did not have to come back that night and took off for work. In the middle of the work day, he started to get the cold sweats, and felt dizzy and nauseous. So, he ended coming home in the middle of the work day and called Karen again to ask if she could come back. Once again without hesitation, she came to our rescue. We are so blessed – before this year, we did not have anyone that could take care of Ella overnight for us, so we would have been in a major bind!

The unfortunate part: Saturday morning Karen woke up and was sick. Man, we still can’t figure out how everyone is getting sick. So, now Karen has been hanging out with us in our guest room recuperating and we’ve been able to return the favor and try to take care of her, as Josh and I both feel better. We feel so bad – she came to rescue us and now she got sick. The other blessing so far: Ella has not shown signs of sickness. We can only continue to hope and pray that she does not get sick! It is so tough with her – she cannot vomit and it usually means a trip to the hospital. So we’re hopeful that we can possibly avoid it, but we should be able to tell over the next few days.

To all the moms out there, Happy Mother’s Day. And for all those with children of special needs, here’s a tribute to us:

Special Needs Moms, a look inside
by April Vernon

You may think us “special moms” have it pretty rough.
We have no choice.
We just manage life when things get really tough.
We’ve made it through the days
We thought we’d never make it through.
We’ve even impressed our own selves with all that we can do.
We’ve gained patience beyond measure,
Love we never dreamed of giving.
We worry about the future
But know this “special” life’s worth living.
We have bad days and hurt sometimes,
But we hold our heads up high.
We feel joy and pride and thankfulness more often than we cry.
For our kids, we aren’t just supermoms.
No, we do so much more.
We are cheerleaders, nurses and therapists
Who don’t walk out the door.
We handle rude remarks and unkind stares
With dignity and grace.
Even though the pain they bring cannot be erased.
Therapies and treatment routes are a lot for us to digest.
We don’t know what the future holds but give our kids our best.
None of us can be replaced,
So we don’t get many breaks.
It wears us out, but to help our kids,
We’ll do whatever it takes.
We are selfless, not by choice, you see.
Our kids just have more needs.
We’re not out to change the world,
But want to plant some seeds.
We want our kids accepted.
That really is our aim.
When we look at them we just see kids.
We hope you’ll do the same.