Comfort

One of my biggest recommendations for new parents and especially for parents of kids with special needs is to find a medical team that you are comfortable working with. At first, for most families, this just means a pediatrician, but that could easily grow to include a dentist, optometrist, and other specialists as your child grows and has different needs. When we were pregnant with Mac, I asked my ob/gyn who she goes to for pediatric care for her kids and followed her recommendation. I've heard of some parents interviewing and researching their first pediatrician, my doctor's recommendation was good enough for us. It has worked out beautifully and we couldn't be happier with her. 

Our medical team grew as Keegan needed to see the pediatric cardiologist in her first year of life and then an Opthamologist just after her first birthday. We have been fortunate enough to have already been under the care of a dentist and an optometrist that can see our kids as well. With all of Johnny's special considerations we are adding on more specialists. He sees our cardiologist and Opthamologist as well, in addition to an ENT, Audiologist, Endocrinologist, and providers at the Down syndrome clinic. His medical needs are time consuming, but we are grateful at how minor they are for the time being. 

This being said, I encourage the following-

First, be comfortable with your doctor's decision making skills. While we can research a lot, we do not have the expertise that our doctors do in seeing situations that arise with our kids and making the best plan to treat those situations. I would also encourage you to tell your doctor that you trust them and appreciate their expertise. This simple statement helps build your provider/patient relationship a lot. We have also found that all the doctors we use err on the side of caution or wait and see if the problem can fix itself. We are appreciative of this hands off approach with non life threatening situations. We always ask questions if we have concerns and have always been treated well by our doctors with one exception. We currently have a doctor right now that we aren't super pleased with, but are waiting for some further information before taking action. Which leads me to-

Second, doctors are very well trained and highly educated members of the service industry. If you do not like your doctor, ask for referrals from friends and find someone that you can work with. Matt and I respect doctors and the hard work they do, but there are times when the fit isn't right with medical providers. In the situation we aren't super pleased with right now, it's a matter of bedside manner and how we were given information about a potential diagnosis. The knowledge of the doctor has never been in question nor has their suggestions for treatment. We will be shopping around for a different specialist as allowed once further information is gathered from a follow up. If you don't agree with your doctor, you are more than entitled to a second opinion, so get one. 

Third, when you have children, special needs or not, you need to be comfortable with your doctor. This is different from the first suggestion and fits more along the physically comfortable part of it. With little kids and specialists, you will be in close proximity to your doctor. Often times, you are holding your kid for exams or procedures. If you aren't comfortable with being close to your doctor, they will have a harder time getting the complete knowledge that they need. Some of our doctors sit knee to knee with us, doctors have had to touch our hands to test certain things for Johnny, doctors have leaned next to us while we held Johnny down, and doctors have done preliminary exams on our kids while I was in the middle of breastfeeding Keegan or MacKenzie (with permission of course). I think many of us wouldn't dream of being seen by a doctor who we didn't want touching us, so I'm not sure why we wouldn't want that same level of comfort for our kids. 

Fourth, if you live in a large city, take advantage of the vast resources you have. I love Houston, but even more so now that I have kids because of the access to Texas Children's. For most things, we see our regular pediatrician, but Johnny gets biannual checkups at the Down syndrome clinic too. It's wonderful to have a group of doctors who solely focus on kids like Johnny to help keep tabs on us. I also worry less for his procedures that need anesthesia because of the level of expertise in this city. 

Fifth, take location into consideration. Our pediatrician's office is less than five minutes away and most of our doctors see us about 15 minutes away from us. With the amount of time spent at the pediatrician in the first few years of life, especially with three, it was important to have someone close by. Additionally, the specialists are all at a satellite office of Texas Children's which means we get experts without having to drive downtown for every appointment. We are still down that way some, but most of our appointments aren't a huge drive. A small sub recommendation would be to budget for valet parking when a trip to a downtown facility is necessary. Parking can be horrendous at TCH-Downtown, so we let someone else worry about it even with the extra cost. It helps bring peace of mind to us and it's a lot easier to get one or more kids in and out of the hospital that way. Plus, if your kid is having an actual procedure and not just a checkup, they can be cranky or tired. Who wants to navigate a parking garage with cranky kids? 

Last, take doctor network into consideration. Our specialists and pediatrician are all also part of the Texas Children's system so their records are accessible by one another. It is really helpful to not have to bring medical records or make sure they are transferred over before an appointment. Even the simple information of kid's growth is helpful for our doctors to have a complete record of, but they can also see when they have been sick, any medications, last immunizations, and special concerns or considerations. 

Once again, we are very grateful for all the luck we have had with seeing doctors over the years. Between perinatal care and pediatric care, we have had a ton of people look after our kids, so having one potential "dud" in the mix is doing pretty good in my book. 

And pictures of the kids just because!

Tiny Blessings Woodlands Event

Back in the fall, Karlin and Jennifer made contact with a woman who lived in The Woodlands when they hosted a class at our church's women's retreat. She was impressed with our little ministry and invited us to an event at her church this past week to showcase, with other's, our ministry and the work we try to accomplish with Tiny Blessings. It was a great event and we were able to meet and make contact with several women who want to be a part of the work God has charged us with. Before the event started, we prayed for God to be glorified, for Him to use us to minister to the hearts of women there, and we prayed for a potential contact to be made with someone who may be able to start an extension of Tiny Blessings in The Woodlands. As we met several women, it was humbling to see their eagerness in finding out more about what we are doing. Many were interested in helping us and working with us in some capacity. I think we were all nervous, but enjoyed the time together. 

Arranging and sorting items the night before 

After dinner, the speaker of the evening, Teri Ussery, of Texas WMU, fueled our souls for continuing on and pressing forth in our ministry. She spoke about finding the cross section between your passion and your giftedness, and in that spot, you will find your calling. Jennifer, Karlin, and I (along with other's in Tiny Blessings) feel honored to have found that cross section combining crochet with ministering to families in our community. Apparently, our passion is clear, we were specifically spoken about as showing excitement and love for what we do. As we sat there fighting back tears, it did feel wonderful to know that our love is clear when we speak about crocheting (and sewing and knitting) to bless our families. 

 Some of our items that are ready to go

I believe we have over 150 hats, a handful of blankets, and several gowns

 Our set up

We randomly got assigned to sit at the Baylor decorated table.

I suspect there was a little money exchanged between Jennifer and the organizers.

However, Jennifer's college roomie was also assigned, randomly, to sit at our table too!

I think it is amazing to see our ministry work. I don't think that we thought, with our first drop off, that we would be able to fill the needs of our own hospital, much less watch our ministry grow and expand, much less be actively seeking people to start their own branches. I never would have been so bold as to ask God to find a person for us to make contact with a year ago and now it just feels right to be engaging and searching for ways to help Tiny Blessings touch more lives. We are also searching for ways to expand our own branch, in addition to being on the lookout for new friends to partner with us in prayer and in making items for our hospital, we are starting to look into possibly growing enough to begin fulfilling the needs of another hospital as well. We just had a conversation last week about how we name our Facebook page "tiny blessings Cypress" because "Tiny Blessings" was already taken. We never would have guessed that the distinction would become important as we rapidly began having other Tiny Blessings Ministries popping out in different parts of the state! We are starting to talk about goals with defined timelines, working on inventory, and setting up a potential meeting for anyone interested in the areas we are looking to expand into. It all seems so official and we can't help but marvel in God's hand in our projects. We started out as a group of mommies with a serious addiction to yarn that were looking for fellowship, plus a small desire to minister to the needs of others without compromising a ton of time to our families. Now there are needs pressed on us, calls to act that we try to answer, and a growing excitement to do more for these families we serve. 

I think we all hope for a few things- that we always answer God's calls for our ministry, that we grow in His name and for His glory, and that we remain grateful for our part in His work. Over and over again last week, people exclaimed how wonderful it was that we do this ministry. We tried to assure them that we are the ones who see wonder, we are the ones who are grateful to be called, and that we are blessed by our little ministry. 

We are so appreciative of everyone's support so far. Our hospital has some very real needs right now and we are working to fulfill those needs and to finish up our first round of hats to honor our Veterans and those currently serving for Memorial Day. Please pray for the families served by our ministry, they have had a rough go the past few months at the hospital, the nurses are hurting alongside the families and they are seeking many items from us. We will be sure to keep everyone updated in the coming months as many things come together.

A huge thank you, once again, to The Woodlands First Baptist for having us last week. You were a blessing to us. 

Glimpse of the Future

Matt and I have reveled in how much our girls tend to play together and enjoy being together. Peeking in on their Sunday school class, we see them choosing to sit next to one another, holding hands to go out to the playground, and playing nicely with each other. At home, much is the same, they share and ask nicely for things, they play together for hours, and mutually enjoy each other's company. I am told that they get along well at school too. I am so happy that they have each other. Granted, they argue and get in disagreements, it's not always perfect sisterhood, but for the majority of the time, they really are friends. We are thankful for that. 

God gave me a little glimpse of the future this afternoon as they played princess dress up together. MacKenzie asked Keegan to fasten up her dress and as I looked to see what they were doing, I snapped this picture

I couldn't help but smile as I thought of how this picture may very well mirror pictures yet to come. Whether it be zipping up regular dresses, prom dresses, or one day, (gulp) wedding dresses, my hope and prayer is that they continue to be there for one another. I pray that they lean into one another and find friendship, honesty, love, and support. And I pray that I am with these sweet girls as they dress up for all sorts of events that life may hold for them. Whether they are preparing for yet another round of princesses singing disney songs or preparing for a special (or the most special of) night(s), we are blessed with one another. 

Choosing

I came across an article/letter this weekend that focused on celebrating moms of kids with special needs. Sometimes I skip over articles like these, as a mom of a kid with special needs, you get sent stuff like this a lot. But I do try to read and view a lot, to gain perspective, validation, and glean truths from others out there that are dealing with circumstances similar to ours. I'm glad I read this one because parts of it really spoke to me. 

http://m.huffpost.com/us/entry/3223043

This portion in particular:

"Every day, you see other kids doing more, yet you celebrate me. Pushing away sadness, you focus on the hope of my future. You let my simple, small steps lead us forward."

It's been getting a little challenging to see Johnny passed up in physical milestones over the last few weeks. Several of his buddies at church are pulling up, taking their first toddling steps, and moving on to "bigger things". It's kind of hard to see. I completely rejoice with my friends that their kids are meeting milestones. I am so happy for that. I am so thankful for friends that understand me when I say, about their younger than Johnny children, "Ugh. He is already pulling up? That sucks!" They know that I am glad for their kid moving along and that I just need to verbalize the frustration. We laugh and they really understand what I mean. That our kids are supposed to meet these physical milestones, they are supposed to get stronger, they need to grow up, learn, and move on.

But Johnny isn't. And when I see his happy face sitting and "crawling" around the nursery floor, next to his friends' faces striving to pull up and creep along, the fear and panic set in. If I let it, I begin to wonder how "bad off" we are. I begin to think about all the dominoes of delayed milestones we are going to have. I begin to doubt all the times I don't work with him in favor if doing other things that are just as enriching as building his muscles. I begin to wonder if I should shut down our family's schedule and commitments, focusing on nothing but correct crawling, pulling up, and cruising along furniture for days and weeks on end. I begin to make lists of alternative therapies I should look into, dietary regiments and vitamin supplements as if there may be some magic pill that could shut off all the hardships that extra chromosome brings. 

It could be debilitating if I allowed it to stay for more than a moment or two. It could cripple me with doubt and carry over into every aspect of my life and my raising of my children, becoming a hindrance to the values we use to lead our lives in raising our children- try hard, take chances, keep pushing, find enjoyment, and seek fellowship. I could let that fear surround me, creating a fortress around me and my family, building walls that are designed to keep as much out as possible, crushing the spirits of all of us inside. 

I refuse to let the pain and worry control me and my life. 

Just as the original quote said, I choose to focus on my son (and daughters) instead. I celebrate him and marvel in him because he is amazing, not just because of what he has accomplished, but because he is. I have to take myself back to the place where, about two years ago, we first learned about his potential diagnosis and we weren't sure if we would ever meet him. That fear was larger than any fear I could have today of him not meeting certain physical milestones. Through God's amazing grace, we have been allowed to raise our son for 18 months now and every day he makes us happy. We as parents choose to deem that as being enough. Johnny loves us, communicates with us, plays with us, laughs, dances, and chases around the room with us. We as parents choose to focus on those milestones as being just as important as the textbook ones. Johnny, for all intensive purposes, is healthy, and while there are several things we still need to figure out health wise, we choose to thank God for giving us our healthy son who grows and learns something each day. And we choose to not allow that fear to control us, but to fuel us to support Johnny and to push him in an understanding and compassionate way. 

I don't know when my son will walk. I do know that he is getting close to pulling up, that his quads, ankles, and core get stronger each day, and that at some point he will walk, run, kick, jump, and climb. We can be certain of these assurances and I choose to be grateful for that. 

Mommy Perspective

We celebrated Mother's Day today. Because I am volunteering in the nursery program at church, our schedules are kind of tight for a nice breakfast or some other sort of relaxing endeavors, so we moved it to today. 

It was a great day filled with sleeping in, cornmeal pancakes, chocolate glazed donut coffee, a quiet house that was perfect for organizing (two bags of recycling, one bag of trash, three bins moved to proper places, and two boxes for donating/having a garage sale), and lunch out. It was the perfect balance of spending time as a family and accomplishing some work that I felt I needed (and wanted) time for. We finished the evening off with a celebration at a friend's house.

After baths, Keegan came to find me, holding a brush in her hand. She was being sweet and funny, teasing me with kisses, and checking on Johnny and I as he laid in my arms finishing his bottle. I gave her a hug as she told me she loved me. I took her hand and tried to tell her how much she meant to me, how important she is to me, and how she is one of the best things that ever happened to me. She smiled politely and proceeded with trying to brush my hair like Anna and Elsa and blowing raspberries into her brother's feet and thighs to hear him giggle. 

I tried again to look at her, to make her feel that mommy love for her, as if I needed her to know that I would do anything for her. But she was busy with other things. 

I took it as the best sign. She knows how important she is to me in all of the things I do for her and her siblings every day. While sometimes she needs the deliberate "I love you so much moments", we make our devotion to our kids such a prevalent part of simply living, that she knows it without a second thought. In her hierarchy of needs, knowing she is loved was taken care of, playing and being silly was a better task at hand for her. 

What a wonderful Mother's Day gift. To feel that your children are perfectly confident in your love for them. Happy day to me!

Johnny at 18 Months

Johnny,

Every day you seem to come more and more into your own, the "toddler" and "boy" coming out of you all at once. You are both more active and interactive and we marvel at those changes that seem to happen overnight. 

You are a carboholic! You love cereal, crackers, and bread and will eat as much of it as we can give you. You also love avocado, king ranch chicken, and bananas if we hold them whole and feed them to you. We sometimes feed you a couple of jars of baby food at lunch to make sure you get some veggies and protein in your diet, but you are doing so much better at eating a varied amount of food that we may not do that much longer. You have also been trying to feed yourself with a spoon or with food we put on the fork for you. You still drink milk from a bottle as we are working on drinking from other cups. You will sign more, eat/food, and all done consistently at meal time. 

Your sleeping habits are still much the same, preferring to be asleep by 7:30 and sleeping until the same time in the morning. Your morning nap is getting a little more flexible, but you are not ready to drop it completely yet. If given the option, you like an hour nap in the morning and a 2-3 hour nap in the afternoon. If you skip the morning though, that afternoon nap easily stretches to 4 hours sometimes. You still fold yourself in half to sleep and we will cover you with the blanket and you like to play with your stuffed animals in the morning when you wake up. The other day you signed sleepy after therapy in order to let us know it was time for bed!

You love to chase Tupperware and balls around the house and will make laps, pulling yourself around, grunting, to chase them. You also love to shake any and all toys to see what sound they make, and you love to read books. Your favorite book is the touch and feel pets book and you have movements or sounds for each page. You would gladly sit in our laps and let us read to you for an hour before moving on to something else. A new game is to stand at the window to look outside while practicing your standing. Speaking of outside, you love to play outside, pulling up grass and scrubbing around in the dirt. Your legs are getting long and lanky, it's funny to see them poking out of your shirts because you look like such a big boy!

You are very, very vocal and will babble and sqwak your way through errands, play time, and meals. People think you are mad or upset as you "talk" and I have to assure them you are just testing out your vocal cords. You will get mad if we pick you up when you are trying to play or if we put you in your car seat when you don't want to go anywhere. Usually you pair this anger with the sign of "all done" as if your yelling at us wasn't enough. We do love that you are working hard to tell us what you want and need, we just need to assure you that mommy and daddy know best! For the most part you are a sweet boy, but we have a feeling there is a naughty streak somewhere inside you. You have started enjoying "escaping" from us and you made several people laugh as you "crawled" away from us in the halls at church yesterday, giggling, and looking back to see if we were following you. You also have developed a biting habit, but only with mommy, on Friday you crawled over to me, bit my hand, and looked up at me grinning. 

Johnny- we love you sweet boy (even with the naughtiness) and can't wait to see how you change over the next month or so, I feel that a huge brain growth spurt is here and that you will learn a lot in that time. We love spending time with you and learning more about you each day!

Love,

Mommy and Daddy