I am introducing a new feature on this blog. About every 3 weeks, I am going to have a good friend of mine, Cindy Fisher guest host the blog. I grew up with Cindy. She was the hard hitting journalist of the school news paper and I was in student council politics. Even after that, we are still friends, closer now than we were then. She graduated from BYU with a journalism degree, and I thought she could help flush out some of the information that you guys may want to know. I appreciate her willingness to ask questions that people want to know, but are sometimes scared to ask. Here is Cindy's article.
Hello readers of this blog who likely somehow have some connection with Jodi and Chris. Or maybe you just found out a sister, brother, daughter, cousin, or good friend has delivered a baby who has Down syndrome, and you stumbled upon this site from a Google search.
My name is Cindy Fisher, and I’m guest hosting this post today. Chris and Jodi were classmates of mine when we all attended Minico High School in Rupert, Idaho in the 90s. Chris was our class president and Jodi was our class vice president. I was the editor of our high school newspaper, and Chris knows I like to ask a lot of questions.
In June I gave birth to my fourth daughter. Nearly two months later, Jodi gave birth to Alea. Chris and Jodi and their family have been on my mind a lot as I care for my daughter. I have wondered how they are doing; what are the differences and similarities of raising a child with Down syndrome?
So Chris said he’d be willing to answer some of my questions. He’s willing to do this so that if you find yourself in the same shoes, maybe you’ll find comfort from knowing others have walked your journey too. Or maybe you’ve been ignorant about the subject, as I have, and now that someone in your life has Down syndrome, you want to know more.
This will be an ongoing feature of this blog. I may not always be the one asking the questions. If you have a question, comment at the end of the post and when time allows, Chris will create another post answering more of your questions.
Please know that I have been completely oblivious about the subject of Down syndrome. If my questions seem painfully obvious what the answer is, I’m so sorry. These questions will deal mostly with raising a child with Down syndrome. I probably have many more questions, but these will have to do for this month.
Cindy Fisher: Does Alea eat normally?
Chris: Yes, for the most part. It did take some time getting there. Jodi was not able to feed her for the first week of her life. They fed her through a tube using Jodi’s milk. They slowly started having Jodi feed her until she could be sustained with nursing alone.
Cindy: Does she eat more or less often than babies without Down syndrome?
Chris: I am not sure, but I would guess it is the same. You have to remember it has been 7 years since we have had a newborn. She is growing great, so she must be eating what she needs. At first they worried about feeding her too much. Babies with Down syndrome, we were told, have a tendency to retain fluids if they eat too much. In order to get her the nutrients she needed in smaller feedings, formula was mixed with Jodi’s milk to get her 22 calories with less volume.
Cindy: Does she nurse?
Chris: Yes she does.
Cindy: Does she sleep much at night and during the day? The reason why I ask that is because I know some diseases can cause babies to sleep in little spurts throughout the day, and I wondered if babies with Down syndrome sleep a lot, a little, or just like most babies.
Chris: Well, she sleeps better than our other two did at this age. She sleeps through the night and takes normal naps during the day. She sleeps like most babies. It is important to mention that Down syndrome is not a disease, just like me having brown hair and blue eyes is not a disease. Down syndrome is in her genes I guess you would say.
She also poops like most babies as well, just in case you were wondering.
Cindy: At what month did Alea start smiling?
Chris: Alea smiled at Jodi when she was 6 weeks old. She smiles all the time now.
Cindy: What were your feelings when you saw her first smile?
Chris: I love her smile. Not sure I really had any specific feelings other than happy. Happy because she is happy. Just being around her is a blessing, and so when she smiles it makes it that much better.
Cindy: Does she grab for objects yet?
Chris: Yes, she started playing really well with her baby gym at around 4-5 weeks. Kids on the Move comes and meets with us to teach us some early intervention techniques to help her practice her muscle control. One of our short term goals is for her to grab a toy and hold on to it for 30 seconds. Her fingers are opening more and more and she is starting to grab thinks like small rattles and rings.
Cindy: Can she recognize you and Jodi yet?
Chris: Yes she recognizes us.
Cindy: Does she prefer Jodi over you?
Chris: Have you seen me, Cindy? Of course she prefers Jodi to me. Jodi is much easier on the eyes than I am, even if I do say so myself.
Cindy: Is she cooing?
Chris: Yes she does. It melts my heart. She definitely has her dad already wrapped around her finger.
Cindy: Can she turn over yet? When did that happen?
Chris: No, she cannot turn over yet. We are working with her to try and get strength in her neck so she can sit up, but she is not turning over.
Cindy: What have been some interesting personality traits/habits of her so far? Can you tell her angry cry verses her bored cry or hungry cry?
Chris: She really doesn’t cry much, but we can tell the difference when she does. She has a mad cry, which we have only seen a couple of times. She has a bored fuss, and she has a “give me some attention” noise she makes. She rarely has to make the last one.
As far as personality, she is such a good baby. My guess is she will be very easy going. She also loves to watch BYU Football with her dad already at such a young age. :)
Cindy: Has she been able to go with you to church yet, or do the doctors advise a few more months away from the church scene?
Chris: She has not gone to church. I was not aware of this before we had Alea but children with Down syndrome are much more susceptible to respiratory infections. The doctor recommended 5 years before she goes to church. J He did say that was not practical but recommended 6 months.
Cindy: Does she have one main doctor?
Chris: She has a pediatrician that is her main doctor. We have talked to a geneticist, cardiologist, and are scheduled for a Pulmonologist this month.
Cindy: Are her doctor visits with local doctors or do you take her to Primary Children’s?
Chris: Our pediatrician is Dr Wiepert in American Fork. The specialists are in an extension of Primary Childrens in Riverton.
Cindy: What does a geneticist do?
Chris: He spent time with us explaining what type of Down syndrome that Alea has. There are 3 different types, Standard Trisomy 21, which is the most common is what Alea’s form is.
Cindy: How often will she need to visit the specialty doctors? Her whole life?
Chris: We hope not her whole life. It is not the Down syndrome that has her seeing specialists, just her other health issues that can be more common in children with Ds. I am sure there will be checkups on her heart and lungs for some time. Right now we just want to get her off the oxygen.
Cindy: Are there extra medications Alea has to take? And does she still get shots?
Chris: There is no extra medication needed for Down syndrome. She does have other health concerns like Pulmonary Hypertension. She is still on oxygen for that. She is current on her vaccinations and will be getting a shot that most don’t get to help prevent RSV.
Cindy: Balancing your attention between children is a struggle for all parents to manage. I know for me personally, having my fourth child has really bothered me how much time I devote to her, and I fear some of my other children may be losing out on my attention. Has that struggle been amplified with Alea? Do you fear your other girls are getting enough attention? How have you and Jodi tried to handle that tender balance?
Chris: Um…this hasn’t been a real issue. We all want to be around Alea, so we are all together. It is difficult at times for Jodi since we can’t take the baby out, so one of us is always home with her. It can make extra activities for the other two girls a little hectic. So far we manage as Jodi usually just loads them up in the car and drops them off at dance and piano without having to get out of the car. We have the primary program next week, so we will have to get creative, but we usually get it figured out.
Cindy: Because we share a common faith, and because our faith testifies of a prelife, has having Alea caused you to reflect more on the eternal nature of man? What, if anything, has changed or deepened your perspective about your faith and your family since having Alea?
Chris: Good question Cindy. The name of this blog has significance to our family as we truly believe Alea to be an angel here on earth. As you know, we lost a son 3 years ago, and Jodi lost her father and two brothers in a plane crash 14 months ago. Needless to say, our family has a host of angels to watch over us. We feel so lucky to have one of our angels physically present in our home.
In the two weeks after Alea was born, she was in the hospital and our lives continued at home, just as they had before she was born. The 4 of us, Jodi, EC, Keena, and myself. It was so empty however. Our home had emptiness to it. The moment she entered our home, the emptiness left. It left immediately and there has been a spirit of peace ever since.
I could go on for some time about how it has changed my perspective on the eternal nature of man. One thing that is for sure is that it has changed my perspective of how we should interact with others here and now. Having Alea has made me want to be a better person and help others more. I guess I want to be less selfish. I need to be more aware of others and how I can maybe give them a hand in their challenges as people have done for us.
I believe that families are together forever. I know this to be true! I know that Alea was one of God’s most choice spirit children in the life before this one, and I cannot wait to live with her together forever. She has brought the pure love of Christ into our lives. The closer I get to her, the more I learn from her, the more charitable I want to be. I know that I am a son of God, and He is mindful of me. With that mindfulness, He has given me the magnificent blessing of walking with our angel.
Cindy, thank you so much for your time, and I look forward to our next chat. I hope the answers have helped you know more.
I am grateful for selfless parents who—perhaps for a lifetime—care for a challenged child, sometimes with more than one challenge and sometimes with more than one child. – Elder Jeffrey R. Holland.