Tuesday, December 31, 2013
Tuesday, December 17, 2013
It is hard to believe that this time last year we were temporarily living in Charleston and waiting to hear when our three month old would be released from the hospital following his first open heart surgery. We had no idea we had just boarded a roller coaster that would lead to six months worth of hospital stays.
Thinking a little further back, five years ago this week we were living our lives as a family of two. Just about 10 days prior we found out that we would be adding a five month old baby boy to our family and were anxiously awaiting the day that we would meet him for the first time (December 19th).
The Lord always seems to find a HUGE way to bless us this time of year and we are looking forward to paying that forward this year.
I am very excited about the opportunity that we have this year to serve the families of the GHS Children's Hospital. Last year was tough spending the holidays in the hospital, but so many people played a part in helping us through. This year is our turn! I am so lucky that my Happy Wheels* day this month happened to fall on Christmas Eve. This means that myself and a friend will be pushing the toy cart through the Children's Hospital on the 24th letting each child choose a gift.
As if that is not exciting enough, on the 26th Bryan and I will be back at the Children's Hospital serving lunch to the parents. We're having a traditional Christmas lunch so that these families can get a little taste of home even while their children are sick. Our friend Josh Trammell will be with us as his organization, Take Heart, will be donating tablets to the PICU and Pediatric Cancer Units. These will be used for educational and therapeutic purposes for the kids and their families. We love our PICU family and look forward to seeing them and being a part of the presentation.
We still need help with lunch! If you would be willing to cook, please let me know. We are serving ham & turkey, green beans, macaroni & cheese, sweet potatoes, bread/rolls, and dessert. The hospital has told us to plan for 60 families, so we need lots of help! Please contact me at email@example.com if you are willing to cook any of these items. Also, if your buisness would like to get involved we could use gift cards for paper products (Costco, Target, WalMart).
Thank you for helping make this a reality for us. I assure you that the families we are serving will be blessed by your willingness to give. We can't make it happen without you!
*If you or your group would be interested in collecting new toys for the Happy Wheels cart I can get you information!
Tuesday, December 3, 2013
One year ago today Brinkley and I walked into Dr Raunikar's cardiology office and left in an ambulance. That ambulance took us to the PICU at GHS Children's Hospital where we spent the night. The next day we boarded a plane and were airlifted to MUSC where we prepared for Brinkley's first open heart surgery.
This morning we made that drive again. I couldn't help but think about it as I pulled into the parking lot at CHOC for Brinkley's doctor appointment. Today's appointment was with sleep medicine and not cardiology, which helped ease my anxiousness a little.
We've come a long way in the last year. Just a few weeks ago Dr Raunikar gave us a wonderful report and scheduled us to come back in February. Brinkley is taking his bottles well and has not used his feeding tube since August. His respiratory problems (with the exception of asthma) are practically nonexistent now. Great strides have been made in therapy and he is exceeding our expectations. As of today, we are attempting CPAP therapy to treat his sleep apnea.
Brinkley was not going to let the day go by without something to make it memorable, so he decided to surprise us and break 15 pounds. He hung out at 13 pounds for a few months and then finally hit 14 pounds two weeks ago. Reese was not going to miss out on the action and had a great day too! His kind heart brought tears to my eyes this afternoon as I watched him make friends with a little girl that has a disability.
There may not have been any outward pomp and circumstance today, but there was a lot of praise and thanksgiving for how far we've come! We are truly blessed.
Wednesday, November 27, 2013
Sunday, October 27, 2013
Friday morning when the team made rounds we were so encouraged! I asked the attending doctor if we needed to notify cardiology that he had been admitted. He told us that everything looked great with his heart and they were not concerned that this was affecting the heart. I told him that Dr Raunikar tends to be overly cautious about Brinkley and we would like to at least have him notified even if it wasn't necessary to be seen. His response was, "Austin Raunikar is an amazing doctor. It has been my goal to strive to be the kind of doctor that he is." I nearly cried (and I'm tearing up typing this).
If you've followed Brinkley's story from the beginning, you know our prayer was never that God would take away Brinkley's conditions, but that He would grant us wisdom in choosing his medical team. This doctors comments about Dr Raunikar were just further confirmation to us that God has been faithful to honor that prayer.
As if those two incidents weren't enough to make this stay seem purposeful, after the team left one of the doctors returned. He asked if he could ask us some personal questions. His wife is expecting their first child (she's 36 and he's 51) and is at high risk for Downs. He asked us a lot of questions about our prenatal journey as well as how things are now. Again, it was my pleasure to share about our precious Brinkley and to educate someone about DS. After talking for a few minutes, he shared his story with us and it was so interesting. He and his wife are both from Iraq. It was an honor to be able to share with him and I was so impressed that he asked.
It was kind of ironic that this happened when it did. GHS is the home of the USC school of medicine in Greenville. One of their programs that I was excited to find out about is one where they send pediatric medical students into the homes of special needs families to observe and learn what life is like at home. This rotation we are the family that they will be observing, so this doctor's questions were preparing us for the students.
To bring it all home, my devotion this morning was about blind Bartimaeus. He approached Jesus and asked him to give him sight. Jesus responded that his faith had made him whole. It wasn't his intellect, his money, or his works, but his faith that healed him. He is an example that faith is all it takes. It is my job to keep the faith on this journey and to know that He is faithful to answer my prayers and embrace every opportunity that presents itself to me. He has proven faithful in my prayers for wisdom to this point and will continue to be. Faith that there is a purpose in this journey. No more, no less.
Brinkley is really hard to stick due to being stuck so many times. They were not able to get labs so we had to come back on Sunday for a recheck. The consensus was that he had a respiratory virus.
Monday we were scheduled to see Peds Surgery for his regular check on his g-tube. Our nurse there was also one of our NICU nurses and she has always been very attached to Brinkley. I told her that I had called pulmonology earlier in the morning to see if they wanted to see Brinkley. She decided that I was not going to wait for a call back and she called them herself and made arrangements for them to see us immediately.
Our regular nurse at pulmonology (surprise, surprise, she loves Brinkley) came in and took over from the tech that was helping us. She quickly got his vitals and put us in a room. Lisa, our NP, checked him out and felt certain that he had RSV. She tested him and gave us an RSV treatment plan. Ironically, the RSV screening came back negative but she wanted us to continue the same treatment plan. Thursday came around and Brinkley did not seem to be making any progress. Actually, he was getting more miserable.
That night his temperature reached 102.8 so I called Lisa. We decided to bring him to the ER, so she called ahead and made arrangements for them to be expecting us. We arrived around 8:30 pm and finally got admitted and moved to a room around 2 am. I talked with the various doctors and and nurses and was able to go to bed around 3 am. Of course, Brinkley was up for the day at 5 am. Needless to say Friday was a long day!
So we have been here since Thursday treating pneumonia. Yesterday seemed to be his turn around day. He played a good bit and got back to his regular schedule for the most part. The team plans to send us home tomorrow. Unfortunately, Brinkley will not be able to be at the Buddy Walk today, but we are excited to be walking for him and hope to see you there!
Tuesday, October 22, 2013
Sunday, October 20, 2013
Looks like a typical happy baby right? Well this is so much more to us. This picture represents a milestone for Brinkley. If you look closely, you will notice that Brinkley's sleeper has a zipper. Unlike most children this is the first time that my 13 month old has ever worn a zip up sleeper.
Zippers are one of the many things I had never considered before having an extra special baby. Up until late August Brinkley was dependent upon a feeding tube. His button where you attach the tube is to the left of his belly button. It would have been nearly impossible to feed him through the night in zip up pajamas.
The beauty of our journey is that we are learning to appreciate things that most families never have to think about. We are learning to stop and notice the simple things, the small victories. This zipper is one of those small victories. It's one more thing to show us just how far Brinkley has come and how faithful God has been.
Following Brinkley's last procedure in August he has no longer been dependent on oxygen or his feeding tube. He's stronger and stronger everyday! This weekend I've had another opportunity to see how far we've come. The little guy now has three teeth. They have come in one after another and just like any kid, he has been a grumpy mess. He's had a low fever several times during this process, but this week it seemed to linger a little long for me.
After two days of a low fever he started coughing as well. Yesterday he was just miserable and very lethargic. After seeing his temperature at 101.4 with Motrin and Tylenol, I decided I needed to take him to the ER. The temp was even higher when we got there.
When the resident came in to check on us I immediately recognized her from a previous hospital stay and she recognized us as well. Her first statement was, "everyone in Children's Hospital loves this guy." That was one of those good and bad things. I hate that the little guy has been there enough that so many of them are VERY familiar with him. On the other hand it is encouraging to know that they all care about him and want to make sure he gets the best possible care.
There was a struggle to get lab work. The attempts were not successful so we were told to come back this morning for a recheck. Another resident that we met last night came to check on us as well as the attending physician. After a through exam they agreed that he has a respiratory virus and sent us home. What, no admission?! Just another small victory! A few months ago, a respiratory virus would have sent us to the PICU. He doesn't even need extra oxygen support. He gets stronger everyday and we couldn't be more proud of him!
He still feels pretty crummy and has a nasty cough, so prayers are appreciated. All in all he is ok and is keeping a smile on his face the whole time. What a trooper! We've got one tough and determined little guy on our hands.
Saturday, October 5, 2013
We started our week with a visit to pulmonology and cardiology. I told Elora, our home health nurse, to be prepared. We see the nurse practitioner at the pulmonology office and to say that she loves Brinkley is an understatement. As she was opening the door to come into the room we heard her tell the medical student, "be prepared to fall in love." Lisa, the NP, was glad to see that we had weened off the 02 and was even more impressed that when they tested him his 02 level was 100%. (I was a little impressed too!) We talked through the procedure that Dr White had done at MUSC in August and made our plan for the winter. Last week they had their first confirmed case of RSV so we were given some pretty strict guidelines to go by for the next few months to protect him from RSV. Don't be surprised if you don't see him out much. After cold and flu season, we may start weening off some of his respiratory meds. Overall they are pleased with his progress and think that he is doing well!
Dr Raunikar, our cardiologist, only had GREAT things to say. Brinkley's EKG and Echo looked GREAT! He was extremely pleased and started weening B off one of his heart meds. Dr Raunikar will be on a mission trip to Vietnam for the next few weeks. When he returns we will check in with him about the change of meds and go from there.
Tuesday we had our regular therapy appointments and Reese had a sleep study. I plan to write a post about the sleep study this week, so be on the look out for that. Wednesday Brinkley saw Dr Markowitz, the GI, who was also pleased overall with his progress and also wants to start weening him off of meds by letting him outgrow the doses he is currently on. He had some concern about Brinkley's weight, but only wanted to watch it at this point. We will see him again after the first of the year and hopefully remove the feeding tube!
After seeing Dr Markowitz we went to neurology for our initial visit with Dr Morales. We had been referred to him when we were struggling with respiratory issues. There was some concern that an underlying neuromuscular issue could be playing into the respiratory issues. Dr Morales did a through exam and did not have any concerns. He said that an MRI would allow him to see if there are any abnormalities that could produce problems, but due to B's pacemaker he can not have an MRI. A CT scan is the next best option, but Dr Morales said that he does not see anything concerning enough to justify exposing him to the radiation of a CT. He does not anticipate any problems, but because Brinkley is at higher risk for potential issues we will be seeing him again after the first of the year to check again.
Thursday we had our regular therapy appointments and we are wrapping up our weekend with the Greenville Buddy Walk tomorrow. We are excited about the walk and tailgating with Team Brinkley! You still have time to join us. The walk is tomorrow at Greenville Tech's Pleasantburg Dr Campus. We'll be there around 1. Hope to see you there!
Monday, September 30, 2013
In some ways these requests seem to be bringing us full circle in our journey so far. When we asked you to pray for wisdom in forming Brinkley's team we did not know what was ahead of us and could not have imagined where we were headed. God has abundantly blessed us with INCREDIBLE doctors that have often gone above and beyond for Brinkley. In the process we learned that many of them (not surprisingly) share our faith. During one of our PICU stays at GHS Dr. Bryan Eriksen was the resident assigned to Brinkley. Dr Eriksen took a particular interest in Brinkley and he studied Brinkley's chronic respiratory issues even after our transfer to MUSC. He has continued to check on Brinkley and offer thoughts about the respiratory issues. Brinkley was under his care in the PICU a second time and Dr Eriksen came in and prayed over Brinkley with us (and Reese). He has been a tremendous help and encouragement to us. We have aslo had the pleasure of being treated by his sweet wife Sara Beth when Brinkley was admitted on the floor at GHS.
Both Dr Eriksens are currently serving as medical missionaries in Kenya. They are being pushed and stretched in their faith and their medical training. I have no doubt that they are blessing their patients there the same way they have blessed us. I ask you to pray for them as they are serving as senior medical team members there. Unlike here, they do not have a team of seasoned doctors to refer to and ask for help. You can follow their story here.
Next I would ask you to pray for my dear friend Beth. She and her husband, Ian, moved to Germany a little over a year ago to serve as missionaries. They have been working very hard to learn the language and be able to communicate effectively with those around them. Beth is currently expecting their 4th child and has run into some complications. I know all too well how scary that can be. I can't imagine how the language barrier escalates the anxiety involved. The two families that generally assist them with translations are both away and were not able to go to the last few Dr visits with them. Please pray for them that the Lord would continue to protect Beth and baby Chadwick. Also pray for their anxiety and the communication barriers.
Finally, we have several friends that are currently having struggles with their marriages. This has become a common theme around us over the last couple of years. So many of our friends have separated and/or divorced for various reasons. Marriages are under attack and we need to stand together for our friends and our own marriages. No one is immune to family problems and no ones marriage is perfect. It's our responsibility to stand together and fight for our families.
Thank you for your faithful prayers for our family. We have seen the power of prayer in our lives and beg you to join us in standing in the gap for these precious families.
*Please add our friend Charlotte to that as well. She is dealing with some issues with her foot and needs to find a treatment that works. She is trying a new treatment today.
Friday, September 27, 2013
Stories like these bring tears to my eyes. This one in particular gets me because of something the mother says. At one point she is talking about her son and says that he loves his life. He has a great life. What parent doesn't want that for their child? (Any child, typical or special needs.)
So many times we think that people with disabilities of any type are sad and pitiful and that their lives must be terrible. Like anyone else, their lives are what they make them. What we let them make them. I am challenged everyday to step back and let Brinkley be Brinkley. It is my responsibility to give him every opportunity that I can to succeed. It is also my responsibility to let him learn on his own. Yes, he is a baby and there are many things that I have to do for him, but there are many things he can do on his own. For instance, he has to learn on his own that chewing on his fingers with his new teeth hurts. Or that swinging toys around most likely will end with the toy smacking you in the face.
Just like every other parent of a child with a disability, I have to keep pushing on, keep providing opportunities for learning and growth, and I have to get out of the way. After watching this video I couldn't help but think about the impact that both of my boys lives will have on those around them.
Reese loves the Toby Mac song Steal My Show. He sang it for quite a while in the car tonight and the lyrics immediately came to mind as I was processing my thoughts on this video. The lyrics became like a prayer. "If You wanna steal my show I'll sit back and watch You go. If You got somethin' to say Go on and take it away. Need You to steal my show. Can't wait to watch You go, oh, oh. So take it away."
My prayer is that Christ would steal the show everyday in my boys lives. I pray that they would embrace what God has given them in such a way that people see Christ in all that they do. Knowing the impact that both of my boys can make excites me as I "sit back and watch You go."
Friday, September 20, 2013
Weighing in at 13 lbs 11.5oz and 25.25 inches long, Brinkley has one tooth. He is rolling everywhere and working really hard on sitting up and standing. He loves to play with his brother and the colorful keys are his favorite toy. Has graduated to Pediasure and is eating without his feeding tube. Best of all, he no longer requires oxygen!
We had a rainbow mustache theme for the night. When our guests entered they were greeted by three tables:
|We asked the guests to sign a 'stache that was added to a poster with the date . |
|We gave each guest a picture of Brinkley to take home.|
|Of course, we had to make a shameless plug for Team Brinkley!|
|They may not be the prettiest, but they were good!|
|Brinkley's monthly banner turned out cuter than I imagined!|
|This smiley banner was probably my favorite!|
Saturday, August 31, 2013
Our donation sites are up and running for Team Brinkley. The first 50 people that donate $10 or more will get a Team Brinkley t-shirt. After those are gone, additional ones will be available for purchase. Orders have to be placed by September 18th to have the shirts for the Greenville Buddy Walk. Here's a look at our awesome shirts:
Anderson Team Brinkley:
Facebook group to keep you informed https://www.facebook.com/events/553425534721052/
Registration and Donation site http://www.firstgiving.com/fundraiser/BrinkleyHolder/2013-anderson-buddy-walk
Greenville Team Brinkley:
Facebook group https://www.facebook.com/events/221282864690109/
Registration & Donation site http://www.dsfagreenville.org/buddy_list/brinkley_holder.html
After making your donation send your t-shirt size to firstname.lastname@example.org. We can't wait to see you at the Buddy Walk! Pass the word along and help Brinkley and his friends take Downs to new heights!
Monday, August 26, 2013
Wednesday, August 21, 2013
|Here he is under the couch. We had to lift the skirt to find him!|
Please join me in praying that Brinkley's stay in Charleston will not stress Reese out and that he will be able to stay focused on doing his best at school. Also pray for Bryan as he will be managing work and school with a potentially anxious little man.
Surprisingly everyone held it together on Monday morning as all four of us made the long walk to Reese's class. He seemed a little nervous (as you can see in the picture above), but he did great. Bryan didn't even shed a tear. I must admit that pick up was rough though. As I sat in the car line my stomach was in knots and I felt nauseous. I nearly burst into tears praying that he had had a good day and enjoyed school. It didn't help that he didn't understand when to get in line and a teacher had to go look for him. As she walked him to the car the solemn look on his face made me even more nervous.
I asked him about his day and he said, "Mommy, I'm never going back there again." My heart sank until, in true Reese fashion, he said, "I'm just kidding! It was great!" His two complaints were that they had to wait too long for lunch and "they don't have any mattresses, bed-rolls, or blankets, or anything." Overall, I'd say it was a success!
I love my boys and can't believe how they both grow and change everyday. It is such a blessing to be a part of their story.
Monday, August 5, 2013
The conclusion is that Brinkley does have enlarged tonsils. To determine if this is causing problems we will be returning to MUSC at the end of August to do a sleep scope of his upper airway. This will require him to be sedated, so he will be spending the night in the PCICU. Dr White will use this scope to decide if it will be necessary to remove his tonsils. If the tonsils need to come out that surgery will be done during this visit as well.
Hopefully there will be a way around removing the tonsils since Dr White warned that this would be a tough recovery for Brinkley. Despite what may come up, I know that God has a plan and it will all come together.
The rest of the week proved to be quite eventful. Tuesday we spent time at therapy and both boys saw the pediatrician. Reese for his yearly check up and Brinkley to follow up on his ear infection. Reese is in the 85% for height and 93% for weight. Brinkley on the other hand was in the 0.04% for weight. However, he has finally broken the 14 pound mark and was a whopping 14 lbs 4.5 oz. I feel like I have Mutt and Jeff.
Wednesday Brinkley was really puffy so I was on the phone most of the day with doctors and nurses in an attempt to figure out why and how to handle it. This led to us being in the pulmonology and cardiology offices from 8:15 am until 2:30 pm on Thursday. We had x-rays, lab work, EKG, and an echo. After some changes in medication we were sent home. Friday Bryan and I took Reese back to school shopping for kindergarten. Where has the time gone?! I can't believe my Reesey is heading to real school.
Despite the looks of it, it really wasn't that traumatic. He is quite the ham for the camera.
Monday, July 29, 2013
October is Down Syndrome awareness month and is celebrated all across the country with Buddy Walks. The Buddy Walk brings awareness to DS and helps to raise money for local support groups and activities for DS families. This year we will be participating in both the Anderson and Greenville Buddy Walks. Brinkley was the youngest participant at the Greenville Buddy Walk last year!
We would love to have you be a part of Team Brinkley and walk with us! You'll even get a super cool t-shirt! The Greenville Buddy Walk will be October 6th and Anderson's is October 27th. If you would like to be a part of Team Brinkley please contact us and we will get you the proper info. Team Brinkley's goal is to raise $250 per walk ($500 total). Also, if you or your business would like to sponsor Team Brinkley we can use your help to provide a banner and t-shirts for the team. We will gladly put your name and/or logo on the banner. As soon as we get a designer, we'll get a sample shirt here and start taking sizes.
The Holder's are excited about all the cool things coming up for Brinkley and we hope that you will be joining us!
Here's the address to contact us at to be included in the mailing list or to get sponsorship information: email@example.com
Sunday, July 28, 2013
After two agencies failed to be able to provide us with a nurse we were picked up by another agency and they immediately had a nurse for us. I can definitely see the hand of God in this and I am very interested to see how this all pans out. Like I said, this is the third agency that we have met with. Our current agency introduced us to one nurse and she worked with us a couple of days, but then decided that it was too long of a commute for her. (I had anticipated this since she was coming from Abbeville.) The next day a new nurse started and she has been with us for three weeks now.
As I said, this is totally a God thing. She and I have been talking a lot and getting to know each other. I have been able to encourage her and she has been a big help to us. In our conversations we discovered that she had applied with the first agency for our family. This was before we realized that the agency was not going to be able to take Brinkley's case. For me, that clarified that she is truly supposed to be with us as neither agency gave her identifying information about us, so she had no idea that she was applying for the same family through two different agencies. On top of this, she only lives two and a half miles from us.
Brinkley is doing well in therapy and is very close to sitting on his own. His OT is impressed with his fine motor skills and wants to start working with him twice a week. Reese is also about to start OT to help him/us learn strategies to help him manage his anxiety and self control issues. This is perfect timing as he will be starting Kindergarten next month. Connie, our therapist, wants to work with us and his new teacher to help him be successful at home and school.
This week we got Brinkley's six month assessment back from his early interventionist. He proved to be progressing well with all of his skills. Overall, he has about a 40% delay for his age. With preemies you consider their adjusted age for a while. Brinkley's adjusted age is seven months. He only has about a 20% delay for his adjusted age. He is one tough little guy and is working hard every day to learn and get stronger.
We have some exciting things coming up, so be on the look out tomorrow for details!
Saturday, June 29, 2013
Yesterday we headed to Columbia to begin celebrating our nephew Jamie's wedding weekend. It was evident immediately that something wasn't right with Brinkley. I checked his 02 level and he was at 84 with his supplemental oxygen. He should never go below 90, so this concerned me. After giving him a breathing treatment and not seeing much change I called his Pulmonoligist. He was very uncomfortable and struggling to breathe. They advised me which hospital to go to.
Not being familiar with the area, I felt it was best to call ems. An ambulance arrived and we were off to Richland Memorial. After a long day in the ER we were admitted to Palmetto Health Children's Hospital. The doctors think he may have a virus and say that we will be here at least until Monday.
The attending doctor told Bryan this morning that his fiancee is the doctor that most recently treated Brinkley at GHS. It always amazes me the ways God continues to weave our story.
It makes me so sad that Brinkley won't be able to attend the wedding. The nurse has assured us that it is fine for us leave Brinkley while we celebrate with Jamie and Stephanie. They've even offered to have a nursing student possibly sit with him.
Though this is not the way we thought our weekend would go, we know that God has a plan and it is perfect.
Monday, June 24, 2013
The lady went on to tell me that the Lord could and would heal her from this problem. She gave me the impression that she wanted to know what was wrong with Brinkley since the nasal cannula and oxygen tank aren't normal accessories for an infant. It seemed as though she was afraid to ask, so I thought I would help her out. "He has Down Syndrome." Her response, "The Good Lord can heal that too." I wasn't quite sure how to respond so I politely smiled and kept pushing B toward our car.
I understand that the lady meant well and probably firmly believed what she said to me, but it struck me rather oddly. Much like the many responses of "I'm sorry" that we have gotten over the last year, this was not something that I wanted to hear. So many people have no idea what to say to someone when they find out that their child has special needs. I know I didn't before I got the unexpected invitation to join this elite club. I will be the first one to tell you that it is hard to grasp the fact that this precious child you are expecting (or have given birth to) is going to have a life long disability.
In those brief seconds following the well meaning lady's comment two things ran through my mind. One was that she apparently has no understanding of Down Syndrome. Though I have a strong faith and believe that my God can do anything, I also know that Down's is not an injury or an illness. It is not something that can be corrected. It is a part of the genetic makeup. I firmly believe in miracles, but I don't think that God is going to miraculously change my child's genetic makeup. My second thought was, I don't want him changed. He is just as God intended him to be and he wouldn't be Brinkley otherwise.
Parents of special needs kids don't want to hear "I'm sorry". Trust me, we've spent plenty of time feeling sorry for ourselves. After we get through our mourning period, we want to move on and love our kids and give them the best that we can. We don't want to hear, "Special people are chosen for special kids." If being special means having the craziness that our family has been through over the last year, then I don't want to be special. I want my family to be normal. I want my five year old to have Mommy and Daddy at home and not think that Mommy lives at the hospital or that I love Brinkley more because of all the time I have to devote to his care. I don't want my infant to have spent 23 of his 38 weeks of life in a hospital room.
Special needs are not something that anyone wishes for, but when we as special needs parents come to terms with the shift our lives have taken, we are free to see the beauty in our kids and embrace the journey. As rough as it may be, it is filled with beauty and I wouldn't trade the opportunities that I have had for anything. I love this little guy in a way that I could never explain and his smile and determination inspire me everyday to keep pushing through.
Last June, after receiving our official diagnosis, I got a call from a support parent that the genetic counselor connected us to. Her first words to me, "Congratulations!" I was caught just as off guard as by the lady at the elevator. It took a while for it to sink in, but now that precious lady has become a dear friend and I can't thank her enough. As the parent of a preteen with Downs, she knew much about the journey that we were embarking on. She is an invaluable resource!
With that in mind, I want to encourage you of what TO say when you meet one of us. As I learned from my sweet friend, "Congratulations" as awkward as it seems at the moment is an incredible reminder to the parent. Our children are a blessing just like children that don't have special needs. We are just as proud of them as we would be of a typical child. They deserve all the hoopla and love that any other child would receive. Another friend's response to my husband, "That's awesome!" Though we didn't know it at the moment, it really is!
If you want to be incredibly helpful to the family pray for wisdom for them as they will need to build a support network. Pray for them to build the right care team and connect with other families. Some friends of ours came to us within a few days of our announcement and told us that the husband has a preschool aged cousin with Down's. They had talked with their family and wanted to introduce us to each other if we were comfortable with that. This was so helpful! The little girl not only has Downs, but also has a heart defect that was treated by the same team that would be caring for Brinkley. No one wants to (or has time to) reinvent the wheel when dealing with a special needs child, so connections with those that have been there and done that are wonderful!
So, offer your congratulations and offer your help. Offer to help the family connect with others you know. Offer to babysit their other children during the MANY doctor appointments. Offer to bring dinner or cut their grass, anything that will give them time to spend with their family and just feel normal. Tell them about an awesome person you know that may share their special need. We always need encouragement! Ask if there are other ways that you can support them. Every family is different, so just ask. They may not be at a place yet where they know exactly what they need, but knowing you are willing makes a huge difference.
Take it from this mom, every little bit helps!
Monday, June 10, 2013
Brinkley has had quite the work up today. He's had blood work to test for allergies, immune system issues, and some viral and infection screenings. We just returned from a chest x ray and are waiting to hear back from Sleep Medicine about home care for his newly diagnosed sleep apnea. Needless to say, he is worn out! We will continue to hang out here as his oxygen requirement is rather high right now.
As for Reese, we are working to regulate his new medication that is to treat his anxiety and behavior issues. So far the medicine is helping to keep him calmer, but it is making him extremely emotional. I am not sure what is worse bouncing off the walls or the constant crying. We'll keep working until we figure it out though.
I keep looking for my opportunities to love on people here while we wait. Today I have a box of cupcakes to share with the nurses. I hope they enjoy!
Please continue to pray for our boys. My biggest prayer right now is that we can get Brinkley healthy and out of here in a couple of days. Reese's birthday party is this weekend and I have so much to do to prepare. Please pray for me as I try to figure out how to balance it all.
Friday, June 7, 2013
We did find out that he has severe sleep apnea. After a 2 1/2 hour visit with Dr Shippey yesterday we returned to the hospital last night to be observed in the sleep lab again. This time he wore the mask and used a cpap machine. The techs observed him all night and watched his numbers to see what settings work best for him. We will return to Dr Shippey next week to actually get our machine and start using it at home.
On a bright note, he turned 9 months yesterday and has finally hit twelve pounds. We saw Dr Everman, our genetic specialist, after leaving the hospital on Wednesday and he says that we are on the right track and covering our bases for now. Even better is that our Jeremy (my nephew) returned from his year long deployment on Tuesday. Last night Brinkley got to meet him for the first time!
We are being referred to an ENT at MUSC to continue working through Brinkley's breathing issues. We hear that a pediatric ENT is coming to Greenville soon, but right now we don't have one, so we'll be commuting for those visits.
The last year has been a wild ride that I could have never imagined. This week I looked back at my journal and wanted to share with you where we were a year ago today.
June 7, 2012
This journey has not been at all like I expected. I guess that is why I shouldn't be surprised by the latest news.
We were excited about our 20 week ultrasound. We would finally have a face and hopefully a name to put with this life growing inside me. Reese and Bryan were both anticipating a girl. I purposely chose not to dwell on it so that I wouldn't be disappointed either way.
Bryan kept saying it doesn't matter as long as it's healthy. But, I know he really wants a baby girl. It only took a few views on the ultrasound before she confirmed that we will be adding another boy to our family.
We went into the exam room to meet with Dr Frederick expecting to hear that I needed to continue to work on gaining weight (I've lost a fair amount) and that he looked good. That's what every family expects, right? Unfortunately, that was not the case for us. She did talk about my weight, but that was where the expected ended. His heart looks healthy and is working properly, but is not positioned correctly. On top of that, he has a thick fold on the back of the neck. Not really understanding what this may mean I am listening intently.
She would like us to get a second opinion and a blood test before making any assumptions or decisions. She referred us to a specialist and ordered her nurse to do lab work. We are to expect the lab work to take a week (this was last Tuesday). As with any lab work she has done, I expect a call from the nurse or a copy of the report mailed to me. When I had a message from Dr Frederick personally just two days later, I knew our journey had just taken a turn. I called her back and she immediately took my call. After fifteen minutes of explanation and questions we found out that we are at high risk (1 in 50) for Down Syndrome. She assured me that this is not a done deal. It is still one in fifty. The specialist will do a more in depth ultrasound and amniocentesis for more definitive answers.
I've had a week now to think about this and all I know for sure is that God is in control and He will be beside us no matter what. Living with and raising a special needs children has come up multiple times in the last week from unexpected places. I don't know if this is a way of preparing me for what's to come or not. I won't know anything else until we see the specialist next Friday. Until then, I am going to enjoy the quality time that I have with my boys and ask God to give me peace.