It is hard but I think treating your GD as able to do things is very important. My daughter was born at 24 weeks and while she did have PT/OT for years, I think she improved the most by just doing the ‘regular’ things - swimming lessons at the Y (because she had no fear and I was afraid she was going to drown after just launching herself into a pool), large motor skill toys like bikes and scooters, gymnastics at the rec center (where she just did what she could), girl scouts and choir at school. Several of her ‘hospital’ friends took a lot of therapies and never learned to swim or ride a bike, in part because their parents didn’t want them to be ‘behind’ in the group classes. I really didn’t care what others thought about my daughters success at activitites. Just do them.
I’ll admit my daughter wasn’t as great with the small motor skills like coloring or writing when she was a toddler, but she caught up in school and now is a pretty good artist, has lovely penmanship (thank you Catholic School), but still can’t add or subtract (oh well). They really can do it on their own schedules. Make it fun, let her wear mismatched socks, don’t require 1st place ribbons in everything, let her enjoy the things she likes.
Could I have pushed my kids more? Sure, but I was fine with them doing their best. They did just fine at their own pace and soared ahead when they were ready.
I hope the research resumes, maybe with private funding? Take advantage of the IDEA and programs available in schools. Having supportive parents will really help her the most, and I’m so glad you said she has those great parents.
IDK if you have heard of Hudson-Alpha Research (Huntsville AL) - they have some amazing gene research and also have a clinical setting situation - the Smith family’s generosity is from Mark Smith’s company success, ADTRAN (and other earlier endeavors). I live locally and financially support their research (I benefited from the biological drug Herceptin which helped me survive aggressive Her2+ breast cancer). I learn about some of their advances regularly. I attended a recent seminar ‘tiny genes’ which discussed zeroing in on specific genes, learning potentially how to treat certain diseases.
It is so devastating to have a child with a genetic disorder such as you describe. I personally have known two sets of parents who have had a child with very severe hypotonia and other disorders.
These Universities with huge endowments could be doing more with research, and perhaps they are willing to spend down some of their moneys. Perhaps working as a partnership with federal funds. IDK how much will stay in place via federal which is largely now under review, but right now w/o being political, there is a paradigm change taking place.
What makes me happiest is that our DDs and grandkids are happy. Overall positive disposition. DH and I and our children and grandchildren are benefiting from focusing on being the best human while achieving at school (doing one’s best). I am able to share my personal experiences as being the middle of five children with my family as it has repeated in another generation (we had two DDs, SIL is one of two, and DD2’s BF is one of two) as DD1 is about to have her 5th child. GS2 age 3 1/2 is ‘the middle’.
Being with them now, I can spend time with GS1’s homework and tutor him a bit - he is K4 (Catholic School) and has a lot more than most K4 programs. Their school (with single classes up to 12th) have the highest average SAT stats in their large city - of course it is college prep and a small class size, but they also have Mass every school day - so it is overall development of the students. GS1 is an eager learner, and math is ‘easy’ for him, but he is not an easy reader like his sister 14 months older than him. We talk about just having extra practice for his vocabulary words and the words in his AR book, and we have a positive time together. This month he has a short poem to recite by memory to his class and had a choice of two. He chose “Fuzzy Wuzzy Caterpillar” (8 lines, two of which are Fuzzy Wuzzy Caterpillar). No fears - posture, accuracy, speaking to audience, and voice are the elements. He did great on his poem last month.
DD2 has chosen to work FT this week, but is clearly tired at the end of the work day. Since I am here, she can head straight to the recliner and is asleep in 2 minutes after she comes in the door with all 4 children.
I haven’t heard of this institute but I’ll pass it along to them. They feel they have a pretty good team local neurologist, genetics team at a large research hospital (the head is a renowned genetic researcher in metabolic diseases in children), several other specialists at a high level university medical center. PT, OT, speech and feeding therapies all through the state and county. Keeping fingers crossed that federal money doesn’t have a negative effect on the ability of services.
I pray for all the kids that need it that the federal money doesn’t disappear. My grandson got PT through Medicaid till he turned three; it made a huge difference in his development (he had unexplained muscle weakness on one side since birth–probably related to his 11 lb birthweight, but no definitive answer). He’s getting around like a champ now. Trying to get and pay for three years of therapy would have been a huge expense for his folks, even with (not very good) medical insurance. Really hope that continues for all the kids who need it.
Tofu is soft and can be cut into cubes or if it’s very soft just eaten with a spoon.
There are tons of veggies—just cook them longer so they’re easier to smash and cut into smaller pieces, like zucchini and broccoli florets. Sweet potatoes, yams, carrots, and spinach. Peas are nice too.
How exciting! Nearly any vegetable that you’d cook, can be cooked a tiny bit longer and he’ll love it. Also fruit, but make sure not chokeable. (I haven’t bought one of those mesh eating bags but it’s a possibility.) My GS also gets a couple of “puffed foods” every now and then (like Pirate Booty but more nutritious). If he eats eggs, a soft cooked egg is another treat. Also, yogurt without chokeable chunks!
One thing to watch out for in that age (having seen it as recently as yesterday ) is that sometimes they get a big mouthful and sense that something is wrong…and try to fix it by putting in more food. Their judgment is not great.
ETA: by “soft cooked egg” I mean “soft cooked-egg” not “soft-cooked egg” i.e. make sure it’s thoroughly cooked
I would check with their parents on their feeding methodology. D1 followed Baby Led Weaning. They didn’t spoon feed GD1 and didn’t puree solids. D1 had a schedule on how she introduced different solids. I only gave GD1 solids per D1’s instruction.
GD1 enjoyed grilled vegetables, like peppers, carrots, broccoli. GD1 still loves frozen peas.
I used to give GD1 frozen mango or strawberry in a large nipple (with a lot of holes for her to get the juice out). The cold also felt very good on her gums for teething.
Definitely work closely with the parents on anything you feed him. That’s about the age my GS was when his peanut allergy was discovered. The parents were doing everything right with introducing new foods, so it was obvious what the trigger was. Fortunately he got checked out by an allergist and that was the only allergy, unfortunately they have to be extremely careful with what they (including 3 older kids) bring into the house or even eat elsewhere.
This baby is 8 months old. The input is great on what the baby has been eating and seems to like to eat.
GD2 (DD1’s 4th child) as well as all her children were interested in table food at their stage of development. The foods introduced can be based on what has been introduced and what the parents would like to have prepared.
DD1 would have liked to breastfeed longer with GS2 and GD2, but her lack of opportunity to have a good place at work to pump (yes, they had a lactation room but too far in the hospital for her to utilize) caused her to dry up - she supplemented with formula until it all became formula. Once GD2 was one, she was eating enough table food to drink whole milk in her bottle and have proper nutrition (she did use a large can of powdered formula intended for age 1 plus, but felt GD2 was getting enough nutrition). At age 21 months, she is 100% table food – and has been for quite a long time, with food cut up in small pieces at home and her bottle is only for water; she uses a sippy cup at meals (with adult help).
With the first local grandchild I made a lot of baby food. I found recipes on Instagram and made things with zucchini, sweet potatoes, broccoli. Lots of puff like bites and vegetable pancakes. Lost the energy for the rest of the kids. My daughter did the baby led weaning method. She did and still does use pouches. They are all careful to read up on the brands that test for heavy metals.
Had lot of the grandkids the last few days. One has an injured nanny so we helped out Friday and took him to therapy and the park. Today was the birthday party for the three yer old. We are ll exhausted.
I am in awe watching my children being such loving parents.
D1 is going to fire the current nanny this Tuesday. I am going to help out on Wednesday, and her in laws are going to help out for the remainder of the week. The new nanny starts on Monday.
The nanny was very good with the kids, but couldn’t work once too many times. D1 said to me, “what did she expect us to do when she couldn’t come in.” I had issue with this nanny very early on when I asked her to take out the trash on her way out and she said it wasn’t her job.
I asked D1 what she is going to say when her new employer asks for reference. I convinced D1 to tell the truth so other parents would be aware. Break up is hard to do, especially with children. D1 is going to be out quite a bit financially because of severance and time required to train the new nanny.
I don’t know if this is accurate or not but I was always told you have to be very careful when someone calls a previous employer for references. I was always told you are only to confirm that they in fact worked for you and the dates. You don’t need to say anything else. I would be very careful about saying anything negative.
That applies mostly in the corporate world because they don’t want to get sued. As long as you are stating the fact such as, “due to our work demands we had less flexibility to accommodate our nanny’s needs of taking time off for personal reasons. Yes, she was great with our kids.”
D1 is part of parents network around her neighborhood, that’s how she has gotten her Nannie’s. I don’t think she would want to get a bad rep either.
The nanny situation for all of my kids is such a big part of making work life work. This week all three of mine have help who are injured or away. D1 has her mother-in-law up for the week to watch her youngest. The three year old has school most of the week but closes for spring break on Thursday and Friday. He’s also off next week but they are taking a family trip. D2 uses a mix of a nanny and preschool. Her nanny is away for half the week. She will end up working from home those days. She has an understanding boss. My son has his nanny out for two weeks as she injured an ankle. They are scrambling. I’m helping some and they are trying to find a substitute. There nanny has to be able to drive as their child has multiple therapy appointments each week.
