Check out my first post on the Cincinnati Children’s Hospital Blog! It’s about Jack overcoming CDH and how we are becoming a “normal” family. Enjoy!
This kid has come a long way! I remember being beside myself the first time Jack finished a stage 1 baby food in 2 days. After that, we spent a year combating oral aversions due to textures and undeveloped skill. You can’t get a baby to eat if they don’t know how to swallow. The old adage, “You can lead a horse to water, but you can’t make them drink” was painfully real. Our only option was to continue to offer new foods and beverages, maintain a tube-feeding schedule and display patience so Jack wouldn’t feel our frustrations.
My display of patience was always noticeably manufactured. I’m embarrassed to admit that there were multiple times during this last year that I lost my cool and would yell at Jack for not eating. I would ask him in a panicked shrill, “I live to eat and you won’t even eat to live! What’s wrong with you?!” And I would storm off to cry. I would cry not only that Jack still had a long ways of developing but also that I felt cheated. I wanted so bad to breast feed, but couldn’t; I wanted to start Jack on a healthy and active lifestyle early in life, but couldn’t; and I found myself pumping him with manufactured, powdered formula at an age well passed a year old. And I felt guilty because I was sad more for how that made me feel rather than how Jack felt.
Jack had never had to eat to live. Nutrition was taken care of for him since birth. That was the only thing that had been taken care of for him. He had spent his life since day one learning to survive. And he did quite the stand-up job doing it, so he certainly deserved my patience. Manufactured or organic.
So, I put on my happy, patient parent hat and took suggestions from therapists, family and friends. We tried food chaining as suggested from our wonderful Children’s speech pathologist, Kirsten. (Side note: when we go back to in-home care this fall, I will be fighting tooth and nail to get Jack’s therapists Kirsten and Shannon back!) I also learned to change my behaviors after talking to a friend, Megan, whose daughter also struggled with feeding development. She said, and I paraphrase, “These kiddos don’t value mealtime like we do. They value playing and exploring so much more. You’re not just teaching them to eat, you are teaching them what it means to eat. But they have to enjoy it first”.
So, here we are, just shy of Jack’s two year birthday. He slowly increased his oral calories and variety of textures over the past couple months for High Risk to allow us a trial week of only oral foods…no formula boluses. The first week, he fell short almost every day after falling victim to his first ear infection. We were allowed to try another two-week trial period as long as Jack’s calorie intake raised from 1000 calories per day to 1200 calories per day and eventually to 1400 calories per day. I thought for sure that we would have to supplement with formula….but… as usual, Jack impressed us all by stepping up and rising to the occasion. He has since picked up a love for chocolate whole milk and is meeting a 1300 calorie per day requirement. Next week, we’ll push it to 1400.
French fries dipped in ranch dressing
Chocolate whole milk
Ice cream (any flavor)
Berry Juicy Juice
It’s been over a week and I have already lost one version of this post due to not saving…so I will try again and make sure this one is posted.
We were given a great day for a walk to benefit the Cincinnati Children’s Hospital Medical Center and all it’s patients and families. Team Jack met by the ‘T’ banner, coffee in hand. The weather was great considering there was rain in the forecast but not in the sky. With the temperature hovering a little over 60ºF, we bundled up, got our race bibs and t-shirts and starting on our walk.
It was very nice to be the normal family amongst a sea of people who were also pulling off the walking trail to administer medications, fill feeding pumps and reorganize piles of equipment under the stroller.
We only encountered one incident where we had to change Jack’s clothes due to a leaking mic-key button but used that chance to change his diaper and then we were on our way. We finished the walk way behind the pack and joined in on the line for pizza….of course until Matt mentioned chicken wings. Then on to Logo’s we went for some chicken wings, beer and commaraderie.
I definitely want to give a special Thank You!! to all who walked and/or made donations. Team Jack and all our donors were able to donate over $1750.00 to CDH research efforts at the Cincinnati Children’s Hospital Medical Center and the donations are still rolling in (the last donations will be accepted until October 31).
…What I do now. This posts is geared towards all the things that I wish I would have known before now. These are things that I know now because of experience, things that I found out about too late, and things that I was told but was lost in the sea of over-information.There are blue links below to guide you for more information.
Volume 1: Financial Assistance and Programs
Become an LPN
In home nursing is expensive! In the state of Ohio (I can’t speak for other locations), you can care for your own child with special needs and get paid for it. That’s right! Be a Stay-At-Home-Mom (SAHM) and get paid for the toughest and most rewarding job that life has to offer.
Some babies will go home after hospitalization and require special needs. For example, Jack requires oxygen and continuous feeding 24 hours a day. He also has an ileostomy that requires (constant) attention. Teamed with the fact that he is not healthy enough for day care, he requires an in-home nurse while Matt and I work out of the home. Now speaking from experience, the in-home nurse staffing companies are less than accomidating when it comes to finding a nurse that will fit your needs as well as someone that you will be comfortable having take care of your disabled/fragile child in your home. An LPN certification will be your life-saver at this point (unless your child requires a RN). Some in-home nursing agencies will actually hire you on to take care of your own child! I have not researched the average income you could receive from such ventures, but for some and especially those that intend to be SAHM, this could be a dream come true. It can take up to one year to receive your certification and some staffing companies require that you have your LPN for a minimum of 1 year prior to hire, but there are some out there that will hire you to care for your own child with only the certification. At this point, the staffing company will bill your insurance or government sponsored program which will in turn pay you.
I am only a couple credits away from being eligable to take the LPN certification exam (dietetics undergraduate). So why am I not taking the test? Matt feels that my current career is too valuable to leave for a two year gig in the long run. Maybe he’s right…I’m still struggling.
Government Sponsored Programs
My last point brings me to government sponsored programs. These all may vary depending on your residence but below are the programs that Matt and I are researching for our situations. All these programs have some kind of quilifier to be eligable for benefits, so check with your city, county, or state. I have found that the best resource for this is the social worker at the hospital of which your child was/is being treated. Cincinnati Children’s Hospital was (and continues to be) more than helpful!
BCMH:Bureau for Children with Medical Hanicaps. The BCMH website lists major componants of the program to include “conducting quality assurance activities to establish standards of care and to determine unmet needs of children with handicaps and their families; funding services for the diagnosis and treatment of medically eligible conditions; collaborating with public health nurses and local health departments to assist in increasing access to care; supporting service coordination for children with selected diagnoses; and assisting families to access and utilize appropriate sources of payment for services for their child.” This program tends to work along side Medicaid within the Ohio Department of Health (ODH).
Medicaid: Ohio Medicaid is offered through the Ohio Department of Job and Family Services (ODJFS) and assists in the financial aspect of medical care. We are currently submitting some of Jack’s hospital bills to be covered by Medicaid.
Social Security: In Ohio, you are required to be approved for SSI before you can apply and be approved for Medicaid. Thought this isn’t a major support in Jack’s financial sand pit but anything helps, and this opens the door to other programs available to disabled children.
Help Me Grow: Provided by Ohio Department of Health “Help Me Grow provides many types of services to infants and toddlers with developmental delays or disabilities and their families. A system of providers works together to provide early identification and family-centered services that ensure your child receives identified services and access to community resources. The program will provide appropriate specialized services and will help you identify present and future needs of your child.” I know that this program is offered in other locales with a different name. Check with your local health department for the name of the program in your area. Matt and I are currently setting Jack up for his Developmental Evaluation to see where he falls on the developmental milestones. His Occupational, Physical and Speech Thrapies will start in the home once his need level is established.
Easter Seals Disability Services: The Easter Seals provide services and support to ensure that children with diabilities “can live, learn, work and play in our communities.” We are using their services to help minimize the financial burden that comes with early intervention. An example is assistance in the cost of a orthotic helmet to correct plagiocephaly or ‘flat head syndrome’ which Jack suffers due to being bed-ridden for an extended period of time. The average helmet can cost around $4000 and most insurance companies view this as cosmetic and will not cover the cost.
Easter Seals is an international charitable organization and is not reginally specific. I encourage everyone to contect the Easter Seals and inquire about assistance.
That will be it for now. I will add more in a continuing post. Keep checking back.
Is there a program that you are aware of that could help parents of a disabled or speacial needs child? Please comment and let us know!
This article was posted on Monday in the Huffington Post. After reading it, I can now start to realize what I am feeling now that Jack is home and I am his caregiver. I thought I would be scared to have him home, but I am so much more than that. I have been spending the last couple weeks with Jack and trying to realize what I feel and how I should act. It’s hard to define your feeling when there are so many colliding in your head that you can’t pick out just one.
I do have to agree with Maria’s last sentence, however. This whole experience is hard, but I wouldn’t want my life without Jack.